How cancer complicated my relationship with eating.
By Sienna Cordoba
Even though the hardcore part of my chemo treatment has been over for ten months, cancer still takes up a lot of my energy. Sort of like a well-meaning but not-so-secretly tortured friend who volunteers to go with you to do errands. Not because they want to have fun together. They just didn't want to be alone that day.
That’s post-chemo cancer to me. It’s like, "Did you really have to come with me?" At the same time, I am feeling incredibly grateful that January 25, 2019 I had my last Herceptin antibody infusion ever (knock on wood) and I am officially port-less.
I tell myself that I have learned a lot over the past year. My journals, however, tell a different story. Before the drugs melted my brain and started to wrap its tiny white threads into a cocoon around me, before I got shut down, waiting endlessly for my “hard restart,” before treatment began, my brain was on fire with a million new habits I wanted to implement.
Re-reading my journal entries from immediately after I was diagnosed, it’s interesting seeing where I’ve fallen short of what I wanted to change about my life. The biggest “failure” that stuck out to me in those journals was "no more junk food." I was resolute then, but my feelings about food and how it serves me are way more mixed now.
When I was first diagnosed, I wished so deeply I was from another culture where food wasn't so addictive and processed and poisonous. The uniqueness of our bizarre food culture blows me away. Like other toxic relationships I have had, the more grotesque, the deeper it has historically drawn me in. Plastic wrapped and full of sugar, irresistible dark pleasures haunt me, as a cancer patient, as a parent, as a body living in the U.S. in 2019.
I reached out to an expert on home-based lifestyle diet and exercise intervention in post-cancer patients, Dr. Wendy Demark-Wahnefried. She wrote a paper in 2001 that basically sums up my life, “Changes in weight, body composition, and factors influencing energy balance among premenopausal breast cancer patients receiving adjuvant chemotherapy” and has dedicated her life to clinical research that involves nutrition related concerns of cancer survivors. The main takeaway of her research was that overeating was not the cause of weight gain among breast cancer patients who receive adjuvant chemotherapy.
Instead, the weight gain that haunts so many breast cancer survivors is “indicative of sarcopenic obesity,” meaning weight gain primarily due to lean tissue loss. In other words, reduced physical activity is the primary reason for adjuvant chemotherapy related weight gain. Interventions focused on exercise rather than diet are more pressing. But food! It still haunts me.
I told Dr. Demark-Wahnefried about my feelings of grief, guilt and confusion around food after my diagnosis and my struggle to eat healthy all of the time. I love junk food. Even though I know what I am “supposed” to eat ... the social environment, the capitalist country I spend all of my time in, the holidays — it all makes it hard for me to be controlled about what I eat. She reassured me that “temptations are part of life … that’s part of living.” And that is why I went through all of this treatment after all, isn’t it? To live.
I am a Living Beyond Breast Cancer Helpline Volunteer and a Young Advocate this year. Through this work, I come into contact with lots of young women dealing with breast cancer, and guilt around food is definitely a shared experience amongst us although everyone deals with it in different ways. It is an incredibly hard topic to talk about openly and honestly without inadvertently guilting and shaming each other.
Recently, another Young Advocate asked on our private message board if anyone had changed their diet after diagnosis. A valid question, and I shared honestly that I went vegan for 2019. Immediately, I felt guilty for my holier than thou answer and my intuition was spot on. Most of the answers were, I would say, defensive and in the camp of “I am already suffering enough, why should I make myself suffer more by denying myself the food I like?” The guilt I feel around food is multidimensional and disorienting like a kaleidoscope, fractured and mirroring and confusing.
Beyond guilt, I also feel angry, extremely angry, about living in a country that does little to protect its citizens from big businesses making loads of money on carcinogenic, hyper-accessible garbage food. Just a glance at the chemicals that the government allows to be used in standard fast food items is enough to make me cry. Google TBHQ.
Last summer, I planned a trip for my then three year old son Monty and I to visit family in upstate New York. A couple of years ago, I would have felt sorry for myself, travelling alone with a kid, too broke to afford the most convenient flights. Post-cancer, the trip was very different. When the pilot's incessant messages about the seat belt light being on or off woke Monty up and he screamed bloody murder, I felt joy and love and gratitude that we were on a plane together, alive. When I had to carry him for the half hour from the gate to baggage claim, complete with him yelling "boogers, boogers!" over and over again, all I could think of was how overwhelmingly fortunate I felt to be able to hold him in my arms at all.
Sometimes my post-cancer brain travels those incredibly gracious and high-minded roads. Other times, I am plagued by guilt, fear and anger—particularly around the topic of food.
I think food and airports give everyone anxiety but I think cancer patients and parents in particular are prone to freak out. Few other places is the food industry blatantly preying on our captivity. I hadn't had access to tons of healthy food to bring to the airport. We stayed the night before at my aunt’s apartment after a long day of travel from upstate New York into the city on a coach. Also, in case you ever travel alone with a small child cross country, you have to think hard about every move you make including what to pack in your backpack— lugging enough toys and food to last six hours but somehow remain light enough to be on your feet for sporadic airport breakaways. Not easy.
Far from the model cancer patient mom I wish I was, by the time we got on the plane, I was carrying a leftover half of a hamburger, that he did eat eventually, and a vanilla shake, that I drank eventually, melted and disgusting, after I realized I had no water about 3/4ths of the way through the flight, on top of all of our other goodies. I extracted snack after snack, trying to keep him quiet and subdued in our small couple of cubic feet seating cage, and my backpack quickly became a landfill, complete with my empty water bottle.
Dr. Demark-Wahnefried told me she loves working with cancer patients as a dietician because it is the sort of community that “stands up” for their health afterwards. Cancer patients are more likely to change their bad habits than most. She mentioned a pronounced halo effect, where cancer patients might start strong and then over the years, slip more and more, in our choices.
I feel like I might have reverse halo effect. This might sound crazy to someone who has not had cancer, but while I was going through chemo, like many, I felt totally justified in eating badly. Even though I knew that I was hurting my body even more, I was in survival mode. I resorted to eating a ton of processed, packaged food—which was not completely unusual for me anyway. People offered to cook for me but honestly I could barely stomach most of it. My whole digestive system was so destroyed by the chemo, my body thrived on empty carbs and exploded with anything that had even an ounce of fiber.
I've been sort of chubby my whole life. And whether this is a result of the food I eat or it's simply how my body is meant to be shaped, that "why me?" feeling has chased me all year. The shame of a cancer diagnosis is overwhelming to the point of being debilitating. But, for me, the anger was more powerful. I am incredibly upset about the food industry and the way most Americans are normalized into eating seriously toxic food.
My mom always gets mad when I say I have eaten junk food my whole life. She grew up working class, eating very different food than I did as a kid, and I think she forgets how often she was forced to give us Eggos as she rushed off to work. Whether it comes from a box or it is sprayed all over our fruits and vegetables, chemicals reign supreme even in relatively “healthy,” middle class homes. I hate to guilt trip my mom, or myself—I just feel so protective over children now and so outnumbered by the crazy food options everywhere I go with Monty. It isn’t just that there is a fast food chain every other block. Like most kids, Monty watches some YouTube shows and even seemingly benign ones will sneak in a Happy Meal for no apparent reason! Studies have shown children have a remarkable ability to recall food products that have been advertised to them.
Of course, there is a flip side to that. There is also a huge industry making tons of money on cancer patients’ fear and selling us all sorts of supplements and fad diets that have no proven track record. Capitalism and cancer—it’s complicated! Regardless, once I finished chemo, I wanted to eat whatever I wanted to eat after months of not being able to taste or enjoy delicious food. I was tired of feeling sad about my body, mourning a health I never really had. I wanted to have fun!
So, I spent our travel day in that in between place on my own personal spectrum of health, feeling ashamed of being low energy and making unhealthy choices but also ecstatically happy and grateful for the ability to fly cross-country with Monty alone, even if (maybe because) it involved eating junk food.
Every three weeks for a year, I got a Herceptin infusion for my triple positive breast cancer. It is a miracle drug—but in some patients it decreases heart function, me included. I was monitored monthly with an echocardiogram. Heart problems are a scary side effect of cancer treatment and I get extremely stressed out about it.
The day after we got back to California, I went to Stanford for my regularly scheduled “echo” and the tech I was assigned was funny. She talked about how tired she was of being a traveling nurse and being apart from her husband. I remember thinking about how she was giving me a very different exam. Usually, the tech asked me to breathe in and out and hold my breath a lot. She didn't do that. The exam was almost over. The last thing they always do is tell you to look up, “tilt your chin up,” and they look down at my heart from my collarbone area. She looked for a lot longer than normal.
She asked me to lay there because she needed "another set of eyes." I looked towards my bag. I lay there covered in sticky pads and ultrasound gel. I remember how all the ultrasounds reminded me of being pregnant at first. Now, they definitely didn’t. I wanted to call my fiance and tell him what was happening but I couldn’t move. When she came back in with the other nurse she called me "sweet pea." I thought to myself, This is how it starts.
They told me they may have found a mass in my chest. "Are you okay?" she asked as she walked me out. I FaceTimed with my fiance from my doctor's office, and he said I looked beautiful. He always thinks that. My doctor tells me not to overreact and wait for the CT scan. He had a similar scare once.
The guilt of the way I had been acting and eating to get through everything surged. I walked over to the infusion center to get my Herceptin. The nurse there also seemed unfazed about the mass as I told her everything. This all happened about a month before my one year cancer diagnosis anniversary.
I had been contemplating what I would do on that day for a while. From my comfy infusion chair, alone in the white white room I never thought I would see, I was pumped with my life saving, heart function erasing miracle drug. I ate a veggie burrito afterwards. The mass ended up being nothing. Nothing to worry about at least.
I am currently fantasizing about adopting an abandoned plot of land in Baltimore and starting a cancer survivors’ organic garden, an idea I got from Dr. Demark-Wahnefried. Instead of obsessing and worrying about saving the world and letting all of those ugly feelings take me over, I want to funnel all of my rage and disgust into working the earth and growing some lovely delicious fruits and vegetables for my fellow fighters.
Sienna Cordoba's writing explores the experience of motherhood under unhealthy conditions. She is a recent cancer survivor and a young advocate for Living Beyond Breast Cancer. She is also Colombian-American and committed to telling stories about Latin America and Latinos living in the US.