“Not This, Not Now”
“Not This, Not Now”
An interview with Alisa Gaylon
Welcome to the end of the month interview! I’m calling it that because, well, here we are at the end of the month. This is a new feature I’m adding for paying subscribers – why not become one now? For $5 a month (or $60/year), you’ll get a long-ass interview like this one at the end of each month, plus soup recipes and assorted other bonus stuff I’m still working out.
For this inaugural interview, my friend Alisa Gaylon graciously agreed to act as guinea pig. Alisa has been my aerial sling coach since early 2022, and was the first person in the circus community I told about my breast cancer diagnosis. She got that dubious honor because, as I already knew, she is eight years out from her own diagnosis and treatment, something she is extremely open about and able to discuss with candor and humor. Her frank wisdom was a real comfort to me in the early days of this, when the prospect of chemo and surgery were overwhelming. More recently, as I take baby steps toward building back my fitness, her understanding of the physiology of recovery has been invaluable.
Marrying two things I love – circus and food – Alisa also teaches at the Escoffier School of Culinary Arts. “I’m not a chef,” she notes, “because chef denotes that you’re in charge of a kitchen. I used to own a restaurant, but now I teach other people how to become chefs and how to take ownership of their kitchens.” She also teaches yoga, other aerial classes, and water-based movement classes – so when I asked how she’d like to be identified she just said “I like identifying as a teacher of things.” Read on, and let her teach you about the importance of early detection, why to be wary of trauma bonding, what to do when you get hit with a surprise medical bill, and how the Steve Harvey show turned her from a couch potato to a fitness freak.
(UPDATE: I’m re-sending this now that I’ve figured out how to a) move the paywall down and b) that there’s already a 7-day free trial option attached. Learning!)
So, can you tell me about your experience of being diagnosed with and treated for breast cancer?
I was diagnosed through a routine mammogram. I never felt a lump. I'm in that age range where it used to be 40 was when you started getting regular mammograms. They have since now shifted it to 50, unless you have a family history, and then it's at 45 -- which I find pretty horrifying as somebody who was diagnosed at the age of 42. Had the guidelines been “don't start going until you're 50 or don't start going until you're 45,” I would not have been diagnosed until it was too late. That really scares me.
So it was my third mammogram, I was 42, and they called me back and said we think we saw something, so we want to do a digital mammogram. And then they repeated it and then they said, well, let's do an ultrasound. And they did that. And then they called me back and said we need to do a biopsy because it looks like ductal carcinoma. And the biopsy confirmed that it was ductal carcinoma in situ.* I was the lowest stage but the highest grade within that stage. I met with a breast surgeon and an oncologist, and they said, "Listen, we've caught it very early. You're not gonna die from this. Not right now, you'll die from something else in old age. It's not gonna be breast cancer that kills you." And that became my mantra: "Not this, not now; not this, not now." I just kind of kept that in my head on repeat for months.
It sounds like you had to make a lot of choices very quickly, yeah?
Yeah. It was also, like, "Here are your options and you have to decide in the next day or two -- because we caught it early and that's great, but it looks like it's kind of really angry -- so make a decision and let's go, go, go." And for me, what I felt most comfortable with was surgical options versus medical options (such as radiation). I was really more “ well let's just take my tits off.” I used the phrase "they're attached to me. I'm not so attached to them"-- you know, just build me new ones. Get 'em off me. I was diagnosed with a very small tumor in my right breast and I decided to prophylactically do a double mastectomy, and it turns out that it was a very smart decision because there was also a very tiny little tumor in the left breast that they found after the surgery. I was very fortunate my lymph system was not affected. The tumor was high up in the chest cavity, but it never actually made it into my lymph system.
I say this a lot but I got lucky -- because a lot of women's breast cancer journey is very fraught with a lot of medication and long treatment with chemo, as you went through, and then followed up by radiation or radiation first followed by chemo. I really was very much just surgery. A lot of surgery, as it turned out, because then I had the fun of reconstruction, and it turned out that the implants used in my reconstruction were recalled two years later because they could cause lymphoma in a small subset of women. My mother passed away from a form of lymphoma, so even though my mom's type of cancer was not genetic, I didn't want to take a risk, and my surgeons were very much on my same thought process of let's get them the hell outta your body and replace them with some other type.
What is the new type?
The ones that were recalled, the company was Allergan. They were the textured implants -- which were popular for reconstruction for women who had had mastectomies because once you take out all that tissue, there's really nothing there to give fullness to the chest. And the texture on the implants kind of helps the pocket so they don't slide down to like your stomach. It helps the skin kind of grip onto it so there's less rippling and it's less noticeable that it's an actual fake silicone implant sitting in there.
So I have a non-textured implant now. And yes, on my right side, in certain positions, there is a little bit of rippling. You can see it. I have thin skin and I'm a slender person. So that's just what it is. And you know what, it's fine. It's fine. I'm alive.
Did you ever consider going flat?
I did, but I wasn't ready to do that yet. I still very much in my life identify my femininity with boobs, and I like having boobs. I'm like a teenage boy in that way. Like, I like BOOBIES. I love boobs. I love looking in the mirror and seeing my boobs.
Well you have very nice boobs now.
I was fortunate enough that I had a surgeon who was willing to do a nipple-sparing mastectomy. So I actually got to keep my nipples. So when I look in the mirror, I actually still see some little tiny parts of my original chest.
Do you have any sensation in them?
None whatsoever. Cause there are no nerves for them to connect to -- all the tissue with the nerve endings was taken out. So the skin has sensation in that, like, I can feel when I'm pushing on them. And they get hard from the cold or when somebody touches them, but like, I don't know that.
Oh, so they're responsive, you just can't feel it. Interesting.
It's very weird. First time I was with my boyfriend at the time, he was like (mimes poking at a nipple) look at this! Neat! And I'm like, it's neat for you, you not for me. Glad you're enjoying them!
But at least when I look in the mirror, I'm still like, oh, I still look like me. I had big boobs before I got breast cancer, and I'm from a family of big boobied women. So I did think about [going flat] when we talked about replacing the implants, but I wasn't ready yet. However! I'm over 50 now. I don't need to have this Playboy ideal of a body anymore. When it's time, the next time around, we will just take these out and go with a nice aesthetic flat closure and be done with it. I don't want to spend the rest of my life going through surgical procedures to replace implants.
When I was getting kind of briefed on all of my options, that was the one that really gave me pause -- that if you have a reconstruction, you have to keep maintaining it for the rest of your life.
Well, it used to be this automatic every 10 years type of thing -- that was the FDA's recommended shelf life for implants. That's no longer the case. The accepted school of thought now is that unless your body is rejecting them or they've encapsulated themselves and it's hard or they're leaking, you don’t need to replace them. Unless there's some need to maintain them, don't go under. So they've kind of changed their protocols on that, which was one of the reasons why I was like, OK, let's replace them now and now I'll have a good new set and we'll be good for 15 years or 20 years. Because unless my body has some sort of reaction to them, there should be no need to mess with these.
So this was about eight years ago, right?
Yeah, 2015. Cinco de Mayo -- I'll always remember.
What else was going on in your life at that period in time? Were you working? You said you had a boyfriend?
Well I was working, and my marriage was falling apart. I was married and we had an open marriage because I found out that he was bisexual. And I found that out not by him telling me, but by finding out that he was cheating on me with men. So we had been going to counseling and then we were having an open marriage so that we could still be together but he could also pursue his bisexuality. And we were trying that, and I was dating somebody else also. And then I got diagnosed and the person that I was dating, I wound up being in an almost six-year relationship with.
I'm no longer with that person. I am able to be in a position now where I can see that that relationship was extremely unhealthy and he was extremely manipulative, and he very much used my illness as a way to insert himself in my life, because he knew I needed somebody and he took advantage of that. Unfortunately, it allowed somebody to play upon my vulnerabilities at a time when I really desperately needed somebody to be there for me -- and he was there for me.
But, I really should have been alone, because I could have been there for myself. I'm pretty strong and I could have done that on my own, or just reached out to other people.
I was going to ask: Did you have other sources of support and community?
I did, but instead it became this whole messy, convoluted relationship thing and it was a new relationship and it became a bigger thing than it really should have been because of my sickness at the time.
Well, it forces things to get kind of real kind of fast.
Yeah. And it's probably the reason why that relationship lasted as long as it did, because there was that trauma bonding in the beginning. Which is really unfortunate, and I see that now, but I wish I had seen it clearer then. Hindsight is always 20/20 and, you know, there's so many things that I wish that I could have looked at more clearly, but when you're working your way through something, you sometimes just have to put one foot in front of the other and do the best you can.
You're in the middle of the forest and you can't see.
Exactly. Work-wise, I had two jobs. I cut back.
Did you have health insurance?
I did.
Oh thank god.
I had fantastic health insurance through my primary employer. We totaled up my medical bills that year and it came out over half a million dollars and I paid out of pocket $5,000. And I mean, thank God. I'm not with that same employer, but every employer I've been with so far since then, I have switched myself to whatever the plan is that I pay the most out of pocket every week from my paycheck for the best coverage. Period. I don't even question it – like, I no longer balk at paying for health insurance. Whatever it is, it's fine. And every year I go to every single doctor, because it's covered.
After I went bald I had somebody look at a mole on the top of my head, because I was, like, what's this giant mole I never saw before? I'm going to go to the dermatologist! I've never been able to do that until I got this job. It was great (and the mole was nothing). Anyway, so, what I'm sort of leading you towards is that I remember you telling me that you also did not perhaps have the healthiest lifestyle at this time of your life.
Oh, not at all. I smoked a pack and a half a day. I didn't exercise at all. Exercise to me was walking the dogs -- I had three dogs and I walked them like a mile or so a couple times a day, and that was it. And I smoked a lot of weed.
So talk me through the "journey," as people like to say, of going from being that Alisa to being the Alisa that I know now, who is extremely fit and healthy.
She still smokes a lot of weed! But now it's legal, and it's considered medicine. I have a license for it!
You don't even have to smoke it anymore!
You can just eat it! It's great. I got cancer at just the right time. Anyway, so number one they basically said, we will not operate on you if you're a smoker. It's a six-hour surgery, because it's two surgeons: It's your breast surgeon and your plastic surgeon at the same time. One comes in and takes out the breast tissue and the other one starts the reconstruction and puts in the tissue expanders right then and there and does the nipple-sparing mastectomy. And you're under for like between six to eight hours, and if you are a smoker, your body will not be able to get through that. So you need to quit smoking immediately.
I used an e-cig and I stepped down in nicotine levels over the course of like a week. So I went from like full strength all the way down to nothing. And then for a year I still carried a non-nicotine e-cig in my purse, and I would puff on it occasionally. It had no nicotine in it, but it was, like, tobacco flavored. Even years afterward I still just carried it with me, just if I needed to like roll it between my fingers as a self-soothing thing. Almost like a fidget spinner. So that was step number one. And that was enough. I was miserable and, and I was also psychotic because of just everything going on in my head trying to make a decision about am I gonna do a lumpectomy with radiation or am I gonna have a mastectomy? And then all this relationship stuff going on. And quitting smoking is a horrible, awful thing, right? That was the hardest part of the journey.
How did you get into doing aerial?
Recovering from my mastectomy, I was watching a rerun of the Steve Harvey show, which used to be filmed in Chicago, and there is a chain of aerial fitness studios that are based in Chicago called AIR. And the women from AIR were on the Steve Harvey show and they were doing a demo and I was high as a kite on narcotics. I was like two days postop. And I'm laying there and I see them with their turquoise fabrics doing their thing. And I said to my then-husband, "As soon as I'm cleared for exercise, I'm gonna try that." And he looked at me and patted me on the shoulder and was like, sure you are.
And part of it was like, "Fuck you, don't challenge me." And part of it was like, no, I honestly think that looks kind of fun. And it turns out there's an AIR studio a mile from my house. Six weeks later I was cleared to exercise, I looked online, they had a one-month membership for like, $75 at the time. I'm off work for the next eight weeks anyway. Right? I got all this family medical leave. So I went and I absolutely fell in love with it. It was the first time I didn't hate exercise. It was FUN.
AIR Fit is like TRX but using aerial sling or aerial hammock to use your body as resistance. So it's not really aerials so much as it is a fitness class using aerial fabric for resistance-based training. But it was fun, it was a lot of conditioning, and I loved it. And my grip strength got really good and I rebuilt my upper body and my arms got strong and my shoulders got strong, and my chest started to get really strong again. And I felt really great and I loved it. And then unfortunately I had to have another reconstructive surgery to take out the implants or take out the expanders, put in the regular implants. So I had to stop. But then I went back to it like I was actually like, hey, like I really like this enough, I'm gonna go back. Which was like the first time in my life I ever went back to something exercise-y.
And then Aloft opened in Logan Square on Labor Day of 2016, and they had that weekend of taster classes: one hour of this, one hour of that. And I went and did everything. I did rope, I did lyra, I did silks, I think I did trapeze? I did tasters of everything and I was like, this is amazing. This place is beautiful. I love everything about it here. So I signed up that first session for silks and lyra, and stretching.
And how long after that did you start teaching?
I got my certification to teach aerial yoga and aerial fitness through air about a year and a half later. And then Shayna (Aloft owner) offered me a position teaching at Aloft in 2019. So I initially started teaching aerial yoga and teaching an aerial fitness class at Aloft. And then I was still taking sling classes, and I did the student show in 2019, and I guess she liked my act.
Oh yes -- the Princess Leia act!
Yeah, the Princess Leia act. Which I have to say is like one of my favorite things that I've ever created, like artistically. It was great fun. And Shayna saw that act and shortly after that was like, maybe do you want to teach beginning sling? And that I think brings us current.
What if anything has changed about the way you live your life since you were diagnosed? You quit smoking. You started exercising. What else?
I care a little bit less about external bullshit and, like, noise? I care more about genuine connections and trying to make those -- and a little bit less about being liked by so many people. Like, I'm not in it to have everybody like me. Just take what I have to say and if it doesn't apply to you, move on. But if it does, let's have a connection about it.
What about what has stayed the same? What is sort of the core Alisa that's carried over from pre-cancer to now?
My positivity. And my sense of humor. And that's truly how I got the hell through cancer.
It's dark, man. You have to have a sense of humor.
Yes. Cause if you don't laugh, you cry. I really truly believe that my positivity is the reason that I was successful getting through my surgeries and healing well. Even my plastic surgeon was, like, I've never seen somebody heal the way you heal. Like your body just responds well and I really believe that that's mental. Like, not that you can convince a wound to heal, but I do believe that if you are a miserable person and you have like a doomsday mindset that your body takes that on and like holds it and doesn't wanna like, regenerate good cells. I know that sounds like a bunch of mumbo jumbo, but I really feel like a lot of it's mental and I try to bring as much of that into every day that I possibly can. Not that I'm all sunshine and roses. I'm a pretty realistic person, but I try to be positive.
What surprised you the most about treatment or about just the experience of having breast cancer?
How at times it could be so coordinated yet so uncoordinated. I was surprised at the grandness of it and how there were so many moving parts and yet sometimes it seemed that all the people who had to move the parts didn't know what they were doing. It was like there were so many cogs that were moving the wheels that all needed to sync up and that sometimes they didn't talk to each other at all to make the wheels turn. And I was shocked about that. I mean, I was at Illinois Masonic, everything was in the same building -- all you have to do is send the paper from that floor to this floor. Like, huh?
That's the part that really frustrated me. Or, like, when I got my first series of bills from after the surgery it turned out one of the anesthesiologists was not in-network. And I lost my mind, because, first of all, I'm out cold. Secondly, you're all in the same hospital group. I don't pick the anesthesiologist! How could you not be in-network? I showed up for surgery with a doctor who's in-network. How could the anesthesiologist not be in network at the hospital with the doctor that is in network ?
And why do I, the cancer patient, have to argue and yell about that? That does not make sense. This is not the thing I should be stressed about. I mean, sorry, but of all the things that I should have to be advocating for, this is not it. But you know what, it was like a $175,000 bill. So of course I have to advocate for it to make sure it gets covered.
Right. You're not just gonna pay it.
Of course not. And eventually I did successfully get it coded as in-network. Because I told them that if they weren't gonna fix it, that they were gonna cover that bill, because I was out cold and I didn't consent to this particular doctor giving me medication. I had no choice! **
That’s the stuff that I found the most surprising about the whole process. The things I found the most positive were the way the doctors worked together. My plastic surgeon and my breast surgeon and the way they coordinated with each other and that I would even have a surgery with two surgeons together and a whole team of nurses. I didn’t even know that was a thing. So, you know, that also was surprising, but in a good way.
Last question: What would you tell somebody who is just getting diagnosed right now, based on your eight years of wisdom?
I would say don't panic. Because, you know, the comment that my breast surgeon made to me is probably the best mantra to keep in mind. This is not what's gonna kill you. Not this, not now.
I remember that's what you said to me when I told you that I had breast cancer. You said don't panic. This is not gonna be what kills you.
Right. This is going to be a shitty fucking year, there's no doubt about that. Like, everything about this process, everything that you're going to have to go through is going to suck, no matter which path you decide to take or which path your doctors ask you to take. None of them are good paths to have to walk. But none of them are going to kill you as long as you walk them. And ultimately you walk the path and you're going to get to the clearing. We're gonna be scarred. Our boobs are not gonna look the same. But we're all gonna get there to that clearing and the sun's gonna shine on our faces again.
Oh, that's beautiful.
And it's true, though. And, like, our bodies change but for most of us it’s OK. I mean, I think about women who get diagnosed in their twenties or their thirties, right? Young moms who get breast cancer before they've had a chance to nurse their children. Or I think about women who really want to have families. I never wanted to have children, so the fact that I got diagnosed at 42, I didn't have to worry about any of that because it wasn't like I was ever on a journey to want to freeze my eggs or something. But I think about those women who really wanted that and how they got robbed of that in some way by their own bodies. I feel for them.
But, the older we get, the more we realize that it's never the path that we thought it was going to be anyway. And that it's OK. That that other path sometimes works out to be the best. Sometimes you meet people along that different path that you never would've met if you didn't have to take it. But however you get there, it matters less what you look like and more that you just get there. Because cancer changes you, It's a portal and once you walk through it, there's no going back.
Yeah. I'm still trying to figure out exactly how it's changing me. I'm still in it, or in the moment of just coming out of it. Like, I can kind of see the clearing, like over there. Still far away.
What I would also tell somebody is that, you know, there's lots of resources and everybody's going to offer you this person to talk to and that person to talk to, and this or that support group. And I would say take them, but take them with a grain of salt and use them only if you need them. I didn't reach out to a whole lot of people. I read some literature online and I really just made a decision that I knew that I felt good with. I knew in my mind that I was going to be OK with plastic surgery, so I didn't feel like I needed to talk to a million people about it. For other people, they might need that kind of support. But there's so much out there that it can be overwhelming when you first get diagnosed. So I would tell somebody to just be, like, gracious and take all the referrals and then reach out to the ones that you need. Because it's a lot coming at you when you first get diagnosed because everybody knows somebody.
Yep. They're everywhere. We're everywhere. Any last thoughts?
Just that I'm a huge proponent of early detection. It is so important that women get mammograms and not wait until they're 50. Really, go at 45 -- and don't skip annual exams, whether it's a mammogram, a colorectal screening, whatever. It is so important not to skip them. They can absolutely save your life – and I am living proof of that. I just turned 50 this year and if I had waited until I was 50 years old to have a mammogram, I would've had a massive lump. I would not have been at stage zero. I would not be sitting here on this Zoom with you to have this conversation.
I’m glad you are!
*DCIS is the first phase of ductal carcinoma, which means that the cancerous cells are still contained within the milk ducts in the breast, where all breast cancer originates, and haven’t yet punched through the wall into the surrounding tissue. DCIS is stage 0 on the 0-4 staging scale. Once it escapes the ducts it is considered invasive ductal carcinoma, and stage 1.
** As of 2019 there’s now a federal law, the No Surprises Act, that forbids charging patients out-of-network rates for care received from anesthesiologists and other specialists at an in-network hospital. But even in 2015 this practice was already illegal in Illinois. Coincidentally, NPR ran a story on this very issue yesterday.