Elyse, a TV producer, filmmaker and mother of two, felt isolated by her lymphoma diagnosis. She struggled to find empowerment until she brought her camera to treatment and rediscovered her talents.
Back in 2014, I had noticed a bump over my right eye. It didn’t hurt but slowly grew bigger, as did my anxiety about what it could be. I finally went to several eye specialists, none of who knew what it was. That was the first red flag. And they each suggested I have surgery to remove it. My “bump” turned out to be a malignant tumor with pre-lymphoma cells. It was a rare kind of cancer known as marginal zone lymphoma that usually affects white men over age 65, not 36-year-old otherwise-healthy mothers. When I got a PET scan to see if the cancer had spread, I lit up like a Lite Brite board.
In the same breath as my oncologist said, “You have cancer,” he added, “but the kind you have is slow-growing, non-fatal, and you won’t lose your hair.” He also said that the treatment would work and that I was going to be ok. It would take some time for me to fully process what exactly I had. It didn’t have the typical markers I associated with the C word. But, I left his office feeling both devastated at the diagnosis, and insanely lucky that it wasn’t worse.
My relief was short-lived. A week or so later, I met with a second-opinion oncologist. She was world-renowned in her field, but her manner was abrasive and matter-of-fact. She said she would need to do more testing to come up with a conclusive diagnosis. But “her instinct” was that this cancer was going to be aggressive. She also said if I wanted to have any more children, I should freeze my eggs ASAP.
I burst out crying in her office. My husband and my mom and I held each other in a tight circle, supporting ourselves and each other against the weight of this news. This is the part of my story where the world felt like it was closing in on me. I didn’t know how much time I had left, how aggressive this was, what kind of havoc the treatment would wreak on my body, how my kids would live through this with me, and then at some point—when??—without me.
I walked around New York City in a fog, like a blurry filter had been applied over my life. Everything was muted and quieter, superficial and detached. I was riding the subway but I wasn’t really present, just floating through the days in a daze. It felt like I was just going through the motions of my regular life, but my mind was on another planet. I didn’t tell anyone except my dearest friends and family.
Then six weeks later, to our astonishment and total relief, the second opinion doc confirmed the same diagnosis as the first, that I had a slow-growing, non-fatal cancer. That is when I felt so lucky to have the cancer I had.
Treatment was immunotherapy, once a week for four weeks. Then, six weeks later, another PET scan confirmed the beautiful news that the cancer was completely gone. Since it’s the kind of cancer that has a chance of recurrence, I continued with two years of maintenance therapy once every two months for the next two years. I’ve been cancer-free since January of 2015.
Every time I went in for an infusion, my emotions ran high. I seemed to be so much healthier than most of the other patients. Somehow, I belonged to this club, but didn’t feel like a card-carrying member. It felt wrong for me to be categorized the same as people with much more severe disease. This made me wonder if I had a right to my feelings, given the fact that I had one of the “good” cancers. It’s such a vulnerable feeling to be a patient. It’s hard to feel empowered when you’re wearing a plastic medical wristband with your name and birthdate on it, waiting for your name to be called like cattle at a farm auction.
So, I started to bring my DSLR camera to my appointments. This completely changed my experience. I was no longer just “a patient,” but was in control, turning this situation I had to be in into a creative project on my own terms. I’ve been a photographer since I was a little girl, so having a camera slung over my shoulder is like having another limb. That access to document my experience allowed me to be in professional vs. patient mode, giving me a sense of confidence that I lacked before. It didn’t even matter to me if I took any photos during each treatment. It was the option to take photos that felt empowering.
Support and Isolation
At the same time, my husband, parents, sister and in-laws sprang into action to help with what we could control. My mom showed up for every treatment to keep me company. And she brought my favorite lox and cream cheese sticks from the Butterfield Market and my best childhood candy, a pack of Twizzlers. Other family members sent me article after article. We devoured books about cancer, went to lectures by wellness leaders. And I started drinking “green” smoothies regularly. It felt like I was in a sprint; I didn’t know I was in a marathon.
Even with all of the love and support I had, it surprised me how isolated I felt. In the pit of my stomach was a rumbling of vulnerability, sadness and anger, and I was mad that my body had betrayed me. It took a long time to heal from that, to learn to be kinder to myself, and most importantly, to feel authentically thankful to the experience for bringing me the insight that it has.
People think a cancer diagnosis exists in a vacuum, but I’ve come to learn that it’s a roller coaster, a continuum with a huge spectrum of feelings that change hour to hour, day to day. It’s so nuanced.
Some friends were afraid to ask me things in an ongoing way, as if bringing up the topic would upset me. Several never checked in after I shared the initial news, and some people just flat out said the wrong thing. (I could write a whole book on What Not To Say To Someone Who Has Cancer…) That’s the isolation—you’re having this ongoing emotional experience that a person who doesn’t have cancer doesn’t even know exists. But I’ve come to understand that reaction now, as a cancer insider: You don’t want to bring up a difficult topic with your friend for fear of making that person upset or making yourself uncomfortable. But actually, bringing it up does good- it makes your friend feel seen and acknowledged, like their experience is real, their emotions are valid. It forges intimacy and authentic relationships. And it tells your friend, “I see you. I’m here for you.” You don’t need to fix my problem, you can just show up and be. That’s actually enough.
Focused on the Future
My kids didn’t know what I went through; I’ve since told them, but at the time they were too young (1 and 4) and wouldn’t have understood it. Knowing that I had to show up each day and fill the role as their mama kept me focused and grounded and present. At the same time, the world of holistic healing and wellness was breaking open for me. I started to accept and embrace the fact that I couldn’t take my health for granted ever again. And that there was lot I could do to strengthen the wellness of my body, mind, and spirit. I know now that vulnerability is a gift and an opportunity for growth, and that the only way out is through.
From my experience getting treatment and receiving the therapeutic benefits of documenting it, I realized that I could use my skills as a TV producer and filmmaker to help others process and feel empowered by their cancer experience (and other vulnerable life moments). I then launched my production company, Mindful Films, which is dedicated to making short-form film content on hope, health, and healing. When a subject is filmed while they’re going through a challenging time, they feel seen, heard, and validated. A thoughtful filmmaker is bearing witness to their experience, and the result is that the subject feels empowered, and that their story matters. I truly believe that sharing stories is medicine, and I’m passionate about holding space for and offering this creative service to others who are going through challenging times.
You can learn more about Mindful Films and the story as medicine here.