ABSTRACT

Much like we are products of our environment, our quality of healthcare is a product of our circumstances.

This story is broken into three parts: THEN, NOW, and BEYOND. The first portion, ‘THEN’, focuses on the narrator’s experiences as a young Latina girl viewing her grandmother’s struggle with cancer and her mother’s struggles as a caretaker. This part is intended to highlight disparities such as language barriers in addition to socioeconomic barriers. The piece then transitions to its second part, ‘NOW.’ This part focuses on the narrator in current time now going through her own medical experience as she experiences a medical scare during a doctor’s appointment. During this, the narrator reflects on what has changed from her experiences watching her grandmother, and how many things remain the same. The final part of this piece, ‘BEYOND’ is largely reflective and reflects on the disparities that remain in the healthcare system and point to what work needs to be done to improve outcomes going forward.

Much of this piece is inspired by my past experiences growing up in a Hispanic household and watching my mother act as a caregiver for my grandmother through her battle with cancer. The first two parts of this piece are influenced by interactions I’ve had with my mother while the last part is intended to be largely reflective on the future work to be done and thus is more research oriented. Reflecting on these experiences as an adult fueled much of my drive to have a career in the medical field. By highlighting some of the smaller disparities underprivileged communities face, I hope to shed light on the much larger problem these disparities create over time.

 

THEN

When I was a little girl, I despised the color yellow.

It was the color of the safety rails on bus 86 that would drop off my abuela and me 9 blocks from the clinic biweekly.

I remember stepping off the bus and wiping the golden flakes onto my faded jeans, a product of gripping the rails a little too hard. My abuela always trailed a few steps behind me, loudly chastising me for abandoning a poor old woman on the bus. She was known for her dramatics. I would take her hand in mine to make up for this and we’d walk together. My abuela’s steps were short and inconsistent; oftentimes my hand would be buzzing by the time we reached the clinic door from her squeezing so hard in an attempt to stabilize herself.

It was the color of the burnt out lights that flickered incessantly in the waiting room of the only clinic that we could accept without insurance.

Receptionists at other clinics had scoffed at the idea of taking my abuela on as a patient, dismissing her case from their attention immediately. I remember sitting at the kitchen table watching my mother flip through a tattered notepad, crossing off clinic names for hours as she heard one rejection after the other. When she finally heard a “yes,” it was at a little unknown clinic 45 minutes away by bus – not to mention the 20 minute walk each way. The receptionist there was clinically overworked, overstressed, and underpaid. Sitting in the waiting room meant listening to the phone going off every 30 seconds, followed by a deep sigh from the receptionist every time before she answered. Without missing a beat, the receptionist would hand me the clipboard and wave me away, not bothering with any instructions. I had memorized her spiel by heart by that point, and she didn’t care to waste her time on us. At only 9 years old, I had learned both the English and Spanish translations for more medical terms than I cared to know. I’d rattle off symptoms to my abuela in Spanish and check the box next to them on the English form. Half the time I’d be checking off boxes before she even replied, however our system still made the simple forms an arduous process. My abuela’s name would eventually be called out and I’d follow her into the room. We’d wait 15, 30, or sometimes 45 minutes for the doctor to finally knock on the door. He’d say a quick hello to me and a strained ‘hola’ to my abuela. As he looked through his clipboard of notes, he’d ask me questions, and I’d translate them to my abuela. I would translate her responses back the best I could, but even then I knew there was always something lost. When I explained that she felt like she was getting worse, he gave an incredulous “Are you sure?” As if I hadn’t watched her wince in pain while sitting down or been beside her when her brisk walking pace slowed to a shuffle. Despite his disbelief, he wrote a new prescription for my abuela in an attempt to get us out of the clinic quicker.

It was the color of her horse pills that we picked up from the pharmacy.

Picking up her medicine was a much easier process, just a quick 15 minute walk from our apartment. Located in our neighborhood, the pharmacy was run by a man who thankfully knew Spanish and would hold spirited conversations with my abuela while I wandered the pharmacy aisles. Although the pills seemed to change color and shape like clockwork, the last prescription were shocking yellow pills of even more startling proportions. Once we arrived back home, we gathered around the kitchen table, staring at the medicine wondering how my abuela could possibly take them. My mother mumbled some words in Spanish that I wasn’t yet old enough to know and read the bottle for the hundredth time, cursing the part on the label that read the pills must be taken whole. With a sigh of resignation, she poured my abuela a glass of water and nodded to the pills. My abuela’s eyes watered while she choked down her medication and unconvincingly muttered that it wasn’t that bad.

It was the color of her bile, fluorescent against the porcelain toilet bowl.

After only 11 days on the new medicine, abuela had lost her appetite but gained unrelenting nausea. I sat on the cracked tile floor beside her while she leaned back against the wall in a moment of refute from the stomach spasms that only brought up bile. I heard my mother from the other room on the phone, angrily arguing with the doctor we had seen less than two weeks before. With a slam of the phone, her footsteps rushed towards us. She sighed and simply said “She’s supposed to get worse before she gets better.”

It would invade the whites of her eyes, bilirubin pouring into every vein.

Only 24 days after starting the medication, we gave up. Her determination to overcome the horse pills had burnt out and my mother no longer had the heart to pour her a glass of water. We sat on the floor of the living room while my abuela sat in her rocking chair. The few times she’d open her eyes would show us the pale yellow. Eventually, she never opened her eyes again to show us. After a tumultuous sprint to catch up with her cancer, we lost the race.  Her battle with cancer was violent and well fought, but her death was peaceful.

It was the color of the ribbons my mother hastily threw into my unruly hair in a halfhearted attempt to make me look presentable for my grandmother’s funeral.

For nearly a decade of my short life, I had known my mother as someone who never held back. She approached every conversation with passion and conviction, even for the simple everyday things. The morning of the funeral, though, she was a wall of stone. As she pulled my hair into two braids and tied them with ribbon, we sat in silence for the first time in my life. I watched her through the mirror, searching for a sign of something, anything. As we walked through the front door, she stopped and looked at me, only to say one thing, “This is one of the heartbreaks we’ll never get over.”

 

NOW

I sit in the waiting room of a practice with bright white lights 20 years later staring at the plastic yellow flower taped to the cheap ballpoint pen in my hand. In my lap is a clipboard with a handful of blank health questionnaires. Somehow, filling out these forms meant that what’s happening is real – that perhaps this is a generational curse. Last night after showering, I palpated a mass on my breast, just like my grandmother had over two decades ago. An ice cold feeling of dread had flooded my entire body, chilling me to the bone.

So now I sit in the waiting room alone, waiting for a physician I found at 2 am when my panic couldn’t be contained any longer. I stick out sorely from the other patients in the waiting room, most appearing to be in their sixties or older. Their partners sit by their sides, some holding each other’s hands, others content with the company. I sit alone. I grew up to be the rational, level-headed one in my family, and my mother had adopted my abuela’s flair for the dramatics throughout the years. So, during my past twelve hours of distress, I had decided to only worry my mother if it came to that. This is the least I can do to protect her from heartbreak.

My thoughts are disrupted by a nurse calling my name and leading me to a hallway of changing rooms. She hands me a plush white robe and kindly instructs me to undress from the waist up. After changing, I put my clothes into one of the lockers just outside the waiting room. I close the locker and grab the key that hangs on a yellow smiley face keychain before wandering to a second waiting area. There was an attempt to make the room resemble a spa – a few lamps are scattered around the dimly lit room and lemon slices float atop the water dispenser. Despite the clinic’s best efforts, my only anxiety heightens. The woman across the room side-eyes my bouncing leg as we waited in silence, quiet classical music filling the empty space. When the nurse called me to the examination room, I look to my feet to see a pile of mustard colored nail polish flakes on the floor.

The nurse leads me to a room that smells aggressively sterile with fluorescent lights that shine too bright. Only moments after sitting on the examination table, my doctor walks in and introduces herself with a perkiness I can’t reciprocate. After some meaningless small talk, she kindly asks to examine me. Suddenly, I feel like a little girl again, in the doctor’s office with my abuela. This time, however, I’m the patient. I yearn for someone to be sitting in the chair across from me, like I had for my abuela – but wishing doesn’t fill the empty seat. The doctor confirms that, yes, I’ll need to come back in for some tests and a biopsy. As quick as she had entered the room, she exits to leave me alone and lonely.

Shortly after leaving the clinic, my mother calls me like she does every day. As usual, she asks how my day is going and if anything is new. I assure her, no, nothing’s changed in the past day and, yes, I’m doing just fine. She begins rattling off about her latest adventure to the grocery store and all the drama it entailed. I tell her that I love her and end the call. Do I tell her now and let her worry needlessly? Will she be more mad if I didn’t tell her from the start? How do I save her from another heartbreak?

 

BEYOND

How do we escape this vicious cycle? How deep do these scars go?

When I reflect on my experiences and compare them to my memories with my abuela, I am flooded with conflicting emotions. So much has changed since I was a little girl, however too many things remain the same that I still fear for my future daughter. Am I supposed to feel relief or is my anxiety justified?

My abuela’s cancer was aggressive and swift, and I’d later learn that Latina women of lower socio-economic status have a higher chance of being diagnosed with a more aggressive form of breast cancer compared to Latinas from higher socio-economic statuses (Rey-Vargas et al). In fact, 23.5% of Latinas in the United States live under the poverty line, compared to 9.3% in non-Hispanic White women (Rey-Vargas et al).  So, after my abuela’s passing, my mother fought tooth and nail to dig us out of the clutches of poverty, and we foolishly thought our lives would change – that we wouldn’t ever go through that kind of heart ache again.  Instead, we were presented with a new set of challenges and we quickly learned that socioeconomic status was only a building block on the foundation of a much larger issue. Although my medical scare would be diagnosed as just that – a benign mass known as a fibroadenoma – I wonder if my financial mobility will be enough to save me in the future.

Once my mother had “solved” our financial troubles, we faced another barrier – navigating the health insurance system. No one in our neighborhood had the opportunity to have insurance, so when my mother and I laid eyes on our brand new insurance card for the first time, we had waved it around like it was a black card. Little did we know that our plan rarely covered any medical expenses, so my yearly visit to a primary care physician remained on our list of splurges. We were hardly at fault, women from low socio-economic status and low levels of education consequently have low healthcare literacy (Echeverri et al). Now, I have health insurance through my job and I rarely have to worry if something is covered or not, however the same cannot be said for my community. In 2014, Latinos had the highest percentage of uninsured among the population, and women without insurance have a higher prevalence of more aggressive tumors (Rey-Vargas et al). I often wonder if insurance would have saved my abuela, but our socio-economic status and lack of coverage are so intertwined it’s hard to decide where to place the blame.

Sometimes I also try to compare my treatment with my abuela’s. Although my physician had spa water and classical music, did she really do much more than my abuela’s did? Would she have spoken in my native tongue? Am I being oversensitive when a physician doubts me? Was my abuela, or was she right? Hispanic women are more likely to perceive disrespect and lack of clarity from their physicians than non-Hispanic women (Schapira et al). On the other hand, Hispanic women are less likely to receive guideline-consistent treatment than non-Hispanic women (Hill et al). Do these things go hand in hand? Was my abuela’s treatment the right course of action? Was mine?

When I look beyond, I see so much work left to do. Hispanics remain the only racial/ethnic group in the United States in which breast cancer is the most frequently diagnosed form of cancer and is the leading cause of cancer related death among Hispanic women (Banegas and Li). Our incidence rates continue to grow and our breast cancer is diagnosed at later stages and larger tumors sizes than White women (Yedjou et al). Moreover, even though our incidence rates are currently below that of White women, our mortality rates are significantly higher, and we get diagnosed younger (Rey-Vargas et al).

So what is the key? It’s hard to say, and probably even harder to implement. Some of the reasons for this occurring is genetic, sure, but perhaps we can change our environments. Education and accessibility are key to changing the tides. With higher healthcare literacy, it’s likely women will begin preventative measures earlier, causing a decrease in the advanced stages that breast cancer is diagnosed at in Hispanic women. But this cannot occur without access to adequate healthcare. If access to mammograms and screenings remain at unattainable costs, we cannot diagnose and treat early on. But access to healthcare goes beyond having machines available – it means having translators available as well. When words get lost in translation, so do symptoms.

This issue is multi-faceted and requires many calls to action for change to happen. But when I look back, I see so much that could have been done better. And looking at where we are now show progress, but potential to do better. But when I look forward, I hope yellow reminds my daughter of sunshine and lemonade – that she doesn’t feel heartache from a flower pen.

 

RESOURCES

Banegas, Matthew P., and Christopher I. Li. “Breast Cancer Characteristics and Outcomes among Hispanic Black and Hispanic White Women.” Breast Cancer Research and Treatment, vol. 134, no. 3, 2012, pp. 1297–1304., doi:10.1007/s10549-012-2142-1.

Hill, Deirdre A., et al. “Breast Cancer Survival, Survival Disparities, and Guideline-Based Treatment.” Breast Cancer Research and Treatment, vol. 170, no. 2, 2018, pp. 405–414., doi:10.1007/s10549-018-4761-7.

Ko, Naomi Y., et al. “Association of Insurance Status and Racial Disparities With the Detection of Early-Stage Breast Cancer.” JAMA Oncology, vol. 6, no. 3, 2020, p. 385., doi:10.1001/jamaoncol.2019.5672.

Rey-Vargas, Laura, et al. “Risk Factors for Triple-Negative Breast Cancer among Latina Women.” Cancer Epidemiology Biomarkers & Prevention, vol. 28, no. 11, 2019, pp. 1771–1783., doi:10.1158/1055-9965.epi-19-0035.

Schapira, Marilyn M., et al. “Communication and Shared Decision Making in the Breast Cancer Treatment Consultation: A Comparative Analysis of English- and Spanish-Speaking Patients.” MDM Policy & Practice, July 2019, doi:10.1177/2381468319881651.

Wailoo, Keith. How Cancer Crossed the Color Line. Oxford University Press, 2017.

Yedjou, Clement G., et al. “Health and Racial Disparity in Breast Cancer.” Advances in Experimental Medicine and Biology Breast Cancer Metastasis and Drug Resistance, 2019, pp. 31–49., doi:10.1007/978-3-030-20301-6_3.