Isabella C., NJ
On my fourteenth birthday, a family friend gifted me a “learn how to knit” set. It was a gift that was intended for me to use and enjoy, but ultimately became an aggravating endeavor that I quickly learned was fit for someone with patience (a characteristic I most definitely do not have). As the needles, yarn, and “how to” book collected dust on my desk over the following months, my mother stumbled upon it and decided to give it a try. The following week, after finishing her medical dictations and charts, she spent hours into the evening at our kitchen table learning all the stitches, knots, and knitting patterns the book had to offer. I can vividly remember my mother’s first swatch which she so proudly showed my brother and me.
I never realized how important knitting would become to her until the cancer came. It became a sort of constant during my mother’s five year battle. When the cancer replaced her “paradise” in the operating room with the confines of our living room walls, it was the one thing she could keep her delicate, but precise, surgeon's hands busy with. On trips to our beach house, when trekking the sand to “beach it” became too arduous, she’d instead ask for us to drive her to the local knitting store where she could learn new patterns from the old ladies who gathered there. Knitting was an action with an assured “success” upon completion — a fruitful activity she could enjoy during all the instability of failed attempts at slowing the cancer growth. Every cancer center Mom went to, her knitting bag was sure to come with her. I got a few scarves, socks, blankets, and a vest out of “the cancer,” but they now serve as tokens of my worst nightmare, here in this life of mine in the absence of my mother.
I was a junior in high school when my mother was diagnosed with lung cancer. She was 51. The evening she told my brother and me is a memory that never fades. I arrived home from a friend’s house late in the evening, since school the following day was closed for the 2016 Presidential Election. My mother was seated at the kitchen counter. I could hear my brother sobbing from upstairs over the sound of commentators’ election predictions blaring over the TV. I sat puzzled at the counter next to her and she uttered the news, “Bella, I have Stage IV terminal lung cancer.” She spoke in a tone that was out of character for her and tinged with the reality of hastened death. I don’t think she could believe the words coming out of her mouth. No one really teaches you how to speak those words, nor how to receive them. Before I could gather my thoughts to inquire how it could’ve been, my mother’s beeper went off, followed by a call from the hospital: a patient was in labor, dilated x amount, suffering x complications, and my mother needed to be there to deliver the baby. Within an instant she was up from her seat, throwing on her jacket, kissing my cheek, telling me to check on my brother, and that she would be back in the morning to explain the news. Out the door she went and in the morning she returned, from quelling patient concerns to quelling those of her children.
That was my mom. Full-time mother and full-time OB/GYN, carrying the weight of the world and some, before she thought about carrying her own. I was always awe-struck by her composure that night, how she could go from finding she was terminally ill in the morning to carrying out a full day and night of work. And how by the end of that week she had a new phrase to cope with the diagnosis: “It’s not ‘why me?,’ but ‘why not me?.’”
To say I was baffled is an understatement. I could not believe her diagnosis was real. My mother lived a healthy lifestyle. She went on walks along the backroads of our rural New Jersey town. She went to the gym. She joined a running club. She never smoked a day in her life. Her lungs were healthy. She was a doctor, for crying out loud. How could this be? My trusted medical source “Dr. Google Search,” became my new best friend. Two pages of my IPhone home screen became bookmarked articles, medical journal entries, and lung cancer patient testimonials. When my friends were discussing “who kissed who over the weekend” at our school lunch, I was busy becoming the most well-read 16-year-old in non-small cell, EGFR exon 20 mutation positive, adenocarcinoma of the lung. And when the question “where are you thinking of going to college?” arose, what would have been “far away from my family” the year prior, turned into the answer “within driving distance, but preferably the tri-state.”
On days my mother would come home with stacks of notes and copies of her medical tests, I would be first to question her about them. I’d read them, recognize a few words from my Google searches, and then pull up one of my bookmarks in an effort to provide her with more information. She always beat me to the punch, though. It was the double-edged sword of being a doctor-turned-patient. She knew everything that was happening and what the complicated oncological terminology meant, even outside of her specialty. Looking back, I think she protected our family and friends from the truth of what the cancer would do, even when she knew what was coming and could begin to feel the effects of the cancer and poisonous medications eating away at her. Nevertheless, she tried to carry on as normal through all the treatments while she still could.
The first year and a half after her diagnosis, because of her mutation, she was able to try a newly developed enzyme-inhibiting oral medication which allowed her to do treatment on her own terms, at home, without being tied to an IV. It was the perfect fit for her, as she wanted to evade the conventional chemotherapy and radiation “route” for as long as possible. Some of the rather unpleasant side effects of the medication were the effects it had on the growth of her skin and nails, and the constant nosebleeds it brought on. Her cracking skin and peeling nails were no match for the Amazon-shopping abilities of my brother and I. We found and bought every nourishing cream and nail strengthener the market had to offer. And for the nosebleeds, well, on-the-go tissues became a weekly grocery store trip necessity.
Despite the side effects, the cancer responded well to the medication, stunting the growth of the lesions in her lungs. She continued her roles as Mom, Lidia, and Dr. Vitale. She was our cheerleader. She attended my piano recitals, our Taekwondo competitions and other school and extracurricular activities. She made us dinner, planned trips, and kept our weekends with her (our parents were divorced) packed with new adventures. She gardened in the backyard with our grandparents, her mother and father. She went to theatrical shows, on shopping trips (she was a fashionista and she would want me to include this detail), and to lunches and dinners with family and friends. She performed surgeries, delivered babies, and saw patients for routine visits. She attended weekly masses invariably. She was the mother, daughter, sister, friend, and doctor everyone could count on and she refused to let the cancer diagnosis rob her life from her — at least not without a fight.
Ignorance was truly bliss; the cancer was there, but it felt distant for a time. Because of the minimal (but manageable) side effects from her first medication, we could all breathe a sigh of relief. We felt assured the medication would continue to work. Or so we thought. Like many cancer patients come to experience, my mother’s cancer grew a resistance to the treatment. Her cancer began to spread to new areas of her body including her spine and brain. The small but growing lesions in her brain brought on new symptoms of headaches, fogginess, and energy drains like no other. It became clear to her and the rest of our family that continuing to work was no longer an option and that her plans to retire years down the road (even with the cancer) could no longer come to fruition. My mother adored her profession; it’s as if it was some inextricable piece of her being, a calling and purpose bestowed on her by some otherworldly grace. In the nights following her newfound awareness of the cancer progression and the realization that her career was to be forcibly ended, I am certain her pillows beheld the tears she never dared to show my brother and me.
My mother began Proton radiation paired with another oral cancer medication and steroid treatment shortly thereafter. 7 a.m. to 2 p.m. I was a student and anytime after 2 p.m., chauffeur, caregiver, and moral support. We dealt with the side effects as they came and excused their presence because, well, anything was better than the dreaded chemotherapy. When the occasional shortness of breath arrived, my brother and I, or my grandparents, would sit my mother down, hand her her knitting bag, and finish out the tasks she was trying to complete. A box of saltines and a can of Ginger Ale always had a place at our table; they became the silent fourth and fifth dinner guests waiting to spring into action for the random food aversions that revealed themselves with each meal we ate. My brother and I teased our mother about her newly broken rule regarding tattoos when she showed us the many places her body had been permanently marked with “targets” for the proton beams. And as her hair began to fall out, our mother amassed herself an arsenal of wigs and head caps in every color so she could match her outfits (I told you she was a fashionista). Over the course of those several months, our dining room table became a 44-by-84 inch museum and microcosm of the cancer journey Mom had been on; her medication bottles, supplements, head covers, books, stacks of medical records, rosary beads, heating pads, and of course, her knitting bag replaced the space on our table where her home-cooked meals once sat for family and friends. Her certificates of therapy completions and custom mesh radiation masks eventually became new spectacles to see as time progressed.
The following year I began college at a small liberal arts university just two and a half hours away from home. My choice was methodical, as I knew I would need to visit home every so often throughout the following years — or as long as my mother could put up a fight. She was elated for me to begin classes and insisted that I immerse myself at school and stop worrying about her and her maladies. The first weeks away were difficult. Being physically removed from my mother, knowing I was unable to help, brought on new stresses in the back of my mind. On Parents Weekend at my university, my grandmother drove my mother to visit me. It was the first time they had seen campus and after only an hour of touring, my mother became fatigued and nauseated, opting to take a short nap in my cramped dorm room. As the semester went forward, my new friends—unaware of my situation—poked jabs at me for calling home every morning and evening, deeming me the “most homesick” of our friend group. I laughed it off, but, truly, I was homesick. There was a constant sense of subconscious guilt I lived with while attending college. I often felt as if I wasn’t optimizing the limited time I had with my mother, yet when I brought up these feelings to her, she scolded me. She wasn’t going to let cancer infect our lives. She insisted that her greatest joy was to see my brother and I thrive doing what we loved.
For the first two and a half years of college, my visits home on the weekends provided me with a sobering reminder of the realities of cancer. The more time I spent away from my mother, the more I recognized her declining weight, dwindling stamina, and disabling coughs. There is no pain quite like watching your mother wither and deteriorate slowly before your eyes. Still, her spirit remained resilient. On the weekends spent at home with her, she would always wake before me, opening my blinds exclaiming, “Buongiorno Principessa” as she’d done for me so many years before. My phone’s image library became patterned — five days of school-related images, followed by two days of “home” images. I constantly took photographs of my mother, especially after her diagnosis. Not posed photographs, but candid ones. The mundane. Photos of her doing the everyday things she would occupy her life with. I had an inkling I might miss those scenes the most: her essence, the time we shared together, and the rawness of moments with her that would eventually become my fondest memories of her.
The COVID-19 epidemic, which began at the tail end of my sophomore year, came as a blessing in disguise. My university granted a virtual class option which in turn allowed me to remain home with my mother for the last half of the semester through the entirety of my junior year. So while the world paused in horror and I listened to the harrowing cries of my classmates yearning to return to campus, I slept soundly knowing I was, and would remain, under the same roof as my mother. It was an ugly, yet beautiful time. I say this genuinely. Just a few weeks into the epidemic, my mother was informed that her cancer had become increasingly resistant to her previous medication and that again, the cancer had metastasized to new areas of her body. She thus began a chemotherapy and immunotherapy regimen as her final resort, and as we anticipated, the side effects were some of the worst. Being isolated from our family and friends didn’t help either, yet within those times of seclusion and gloom came pockets of peace. On days she wasn’t in the hospital for treatment, we found time in between my classes to watch episodes of our favorite TV show, play board games, cook new recipes, and dive deeper into our family history research. And when tucked away behind my computer for classes, I could always gauge where in the house my mother was by the snores of our faithful and beloved dog Rosco who constantly slept at her feet. It was around this time, too, that my mother began a new venture in lung cancer advocacy. In 2019, the year prior, my mother had launched her first local advocacy campaign for lung cancer research. She collected donations while also creating flyers, giving out wristbands, and providing local residents with radon testing kits in an effort to bring awareness to the disease. She enjoyed advocacy work; I think it was the outlet she needed to channel her own suffering into productivity, mentorship, and healing. During COVID and her bout with chemotherapy, from 2020 through 2021, she felt it was all the more necessary to bring awareness to lung diseases and their impacts on patients and their families, and subsequently began working alongside the American Lung Association.
In the same way I am sitting typing the story you are currently reading, I can remember my mother seated in her office, typing away at her computer, sharing her story with hopes it would give other patients and their families some solace in times of despair and uncertainty. During what would be the final year of her life, though practically immobile and debilitated by lung cancer and chemotherapy, she somehow found the strength to write and speak words of hope about the very disease that was killing her. She mentored other lung cancer patients in earlier stages of their diagnoses on the various medications and treatments available to them. She pressed legislators and congressmen for increased funding for lung cancer research and helped organize initiatives and fundraising for advocacy, especially among the non-smoking population. “These researchers need to stay ahead of me. We need new, superior treatments. I need to do this,” she’d resolutely declare when I tried prying her computer from her in an effort to make her rest. Her unabating optimism shined so brightly in our closed eyes.
My mother passed away on September 22, 2021, just ten days shy of the American Lung Association LUNG FORCE New Jersey Walk she’d been fundraising for and planning to attend.
I have a profoundly complicated relationship and history with lung cancer. It has shown me what unmerciful demise looks like. It has shown me the helplessness of trying to control the uncontrollable. It has shown me a grief like no other and the shrieks of a mourning mother and father that no human ear can bear to hear. It has robbed my mother of experiencing me and my brother’s milestones which she deserved to be a part of. It has robbed years of my mother’s love and advice from my life. But lung cancer has also shown me the resilience of the human spirit, my mother’s unwavering perseverance, and the importance of living in each and every moment. It has shown me the importance my mother placed, both in sickness and in health, on the wellbeing of others. She had so much life left to live, and the prematurity of her death has revealed to me the critical necessity of increased research and screening for lung cancer in smoking and non-smoking populations alike. I wholeheartedly believe, with every ounce of my being, that the reason my mother was able to live far beyond her initial prognosis was because of the chemotherapy and radiation alternatives she was afforded — alternatives only recently developed as a result of increases in lung cancer research.
I am overwhelmingly thankful to have been given the opportunity to continue my mother’s work in lung cancer advocacy with the American Lung Association and the network she loved so dearly. As the Lung Force Hero representing the State of New Jersey for Advocacy Day 2022, I intend to be the keeper of my mother’s legacy, prioritizing lung cancer research and healthcare in an effort to save patient lives the way I wish it could have saved hers.
