Surviving Cancer, And Documenting the Journey
Karlie Hustle
By Karlie Hustle, as told to Cindy Augustine
NYC executive Karlie Hustle spent her 30s building a career in the competitive music industry. Just before turning 40, she met her partner and had a daughter. While podcasting about life in this new decade, Karlie mentioned wanting to venture into documentary filmmaking. A listener connected her to a producer and boom — she was involved in a film project. Then she was diagnosed with breast cancer, and decided to turn the cameras on herself. High Touch, the short film that resulted, just made its debut (and won an Audience Award at NYC’s Chelsea Film Festival). Now in her mid-40s, Karlie continues to advocate for patients and survivors, and recently spoke to this fellow survivor about her life, pinkwashing, and how the doc came to be.
“High Touch was not supposed to be solely about me or about cancer. I was connected with a producer, Dan Eason, who was already working on a documentary called High Touch, which was about connecting with nature and the outdoors. We fleshed out the idea over multiple years, had everything mapped out, and then I was diagnosed with breast cancer.
In early 2019, I thought we could shelve the documentary until I was out of treatment or we could follow this [new] story as it unfolded. We followed the story. Due to a shoestring budget…and being diagnosed with cancer, then Covid happening, everything changed. It’s been six years now and the film has gone through a lot of changes, but it just got to a point where we had to just put it out.
When I was first diagnosed, my partner and I discussed how I was going to handle it. I hemmed and hawed (like, am I going to go into a hole and disappear for a year? What feels true to me as a person?) He was supportive of whatever I chose. I’ve always used social media in a pretty transparent way, as a tool to storytell, learn and argue, and share and build community. So I did a lot of documenting on Instagram and Twitter of my life in cancer treatment.
At some point, I became slightly radicalized, because I saw firsthand just how fucked up the whole thing really is: how classist being sick is, how racist it is, how sexist it is. When you go through something like this, you see behind the curtain and learn how things function. Ultimately, I felt very blessed for my support, but I had to learn how to accept that support and the humility that goes with asking for and receiving help. I also saw people go through cancer treatment alone, or without funds, and saw a lot of the inequities that exist.
One in eight women will get breast cancer — crazy odds! And all we can do is paint everything pink and make funny signs about saving tatas and not dig into the fact that this can be a life-altering, life-ruining disease for people. Not even just the cancer treatment itself, but what happens afterwards, and how little support there is for even the most resourced. It’s vile, honestly, and being in chemo and hopped up on steroids from the chemo, I felt some sort of duty to speak out and film it for the documentary.
I just wanted to show what my reality was like, and just how difficult it is to endure something like that. I went from having clarity while in treatment to having that all evaporate shortly after. It feels like a whole new world after cancer treatment and there isn’t much support.
Before I was diagnosed, I was in an individualistic space for most of my life. I grew up in an unstable home and learned to survive day-to-day on my own. Individualism has a negative connotation, but it was a survival technique. I carried that with me and avoided depending on other people. I had friends and people I could call on, but I just didn't feel compelled to do that. As I got older and met my partner and we had a child, I had to face those issues and learn how to be a part of a team. There have been countless lessons in that and ultimately, my family is my home base.
When you go through something difficult, there will be people who show up for you out of nowhere to help, and some who fade away. That was difficult. I was hurt by certain people, but I know most are just doing the best they can with what they have. Now that I have some space, I realize this kind of illness is triggering; people want to pretend like it’s not happening.
I had a double mastectomy. I basically have implants and skin [now], so every couple of years I go to the plastic surgeon. Your body is never the same after chemo — or surgeries of that magnitude. [My ovaries] got fried, it’s been a rollercoaster ever since, and there’s not much I can do to correct it as far as energy or mood. It feels chaotic in my body. I always wore red lipstick, it was my thing, and I kept doing it in [cancer] treatment because I felt like I didn't look totally dead.
Before I turned 40, I got pregnant and my body and life changed in so many different ways. I felt like I was on my way to feeling better, and then was diagnosed with breast cancer. Over the past decade — my daughter is almost eight now—there have been so many changes to my body. It’s been tough to handle and manage. I was lucky to work at a company that fully supported me during that time of illness. I knew of a woman who worked until the day she died, literally, of breast cancer. So to feel like I wasn't being cast aside and forgotten was fantastic, especially as a woman in a male-dominated industry.
I don't and didn't want cancer to be my personal brand. Putting out a documentary where I look very sick is a risk of association for people who don't know me. I vacillate between wanting to forget [cancer] ever happened and knowing I can never go back to being the person I was before. And my body can never go back to what it was before. There were several years of traumatizing grief about the ways in which my life has changed and it took a long time to come to acceptance.
It was difficult to go from, “You’re cured of cancer! Go live!” to “Be careful of someone breathing on you.” Every time I got sick, I would have a spiraling meltdown [imagining] that I would never get better. Once something like [cancer] happens to your body, you can see it either as your body betrayed you, or you can see it as your body was fighting for you. There's a lot you have to process and grieve, and it’s such an insular journey. I can talk to another survivor, but ultimately I have to sit with myself; being seen and being heard is important. Though ultimately, so much of this journey has been solo.”