Save this storySave this storySave this storySave this story
As you approach death, at least based on my limited understanding, memories surge back. Pictures emerge quickly—faces, locations, and random chats—and they persist relentlessly. I envision my closest childhood companion crafting a dirt pastry in her yard, decorating it with tapers and a diminutive Stars and Stripes, then watching, horrified, as the flag ignites. I see my college sweetheart, clad in deck shoes shortly after a record snowfall, losing his footing and landing in a snowbank. I yearn to terminate the relationship, so I chuckle uncontrollably.
Perhaps my mind is reliving my existence now because I’m facing a fatal condition, and these recollections will disappear. Maybe it’s because I lack the opportunity to forge new ones, and a piece of me is sorting through prior experiences.
On May 25, 2024, my daughter arrived at seven-oh-five A.M., a mere ten minutes post my arrival at Columbia-Presbyterian hospital, in N.Y.C.. My spouse, George, and I embraced her, marveling at her freshness. Later, my physician detected irregularities in my blood test. A typical leukocyte count hovers around four to eleven thousand cells for each microliter. Mine was a hundred and thirty-one thousand cells per microliter. It could be a consequence of the gestation and birth, the doctor stated, or potentially leukemia. “It’s not leukemia,” I reassured George. “What are they discussing?”
George, then a urology intern at the medical center, began contacting friends who practiced general medicine and obstetrics. Everyone attributed it to something relating to pregnancy or the labor. Hours elapsed, and my doctors began suspecting leukemia. My parents, Caroline Kennedy and Edwin Schlossberg, had transported my two-year-old son to the facility to meet his baby sister, yet I was suddenly being shifted to a different floor. My daughter was taken to the newborn care unit. My son resisted leaving; he wished to steer my hospital bed as though it were a bus. I bade farewell to him and my folks and was wheeled away.
The diagnosis indicated acute myeloid leukemia, accompanied by a rare anomaly termed Inversion 3. It primarily occurred in more senior individuals. Every medical professional I encountered inquired if I had frequented Ground Zero extensively, given the prevalence of blood cancers among first responders. I was present in N.Y. on 9/11, in my sixth year, yet I didn’t visit the area until years later. I am not aged—I had just celebrated my thirty-fourth birthday.
A conventional therapeutic approach could not provide a remedy. I required several months, minimum, of chemotherapy, aimed at diminishing the population of blast cells within my bone marrow. (Blast cells are premature blood cells; an elevated quantity can indicate leukemia.) Following that, a bone-marrow transplant would be essential, potentially curing me. Post-transplant, I would likely necessitate continuous chemotherapy, to impede any resurgence of the malignancy.
I couldn’t—wouldn’t—accept that they referred to me. I had swum a mile in the pool the previous day, being nine months into my pregnancy. I wasn’t ailing. I didn’t feel ill. Actually, I was among the healthiest people I knew. I consistently jogged five to ten miles within Central Park. I once swam three miles across the Hudson River—ironically, to raise funds for the Leukemia and Lymphoma Society. I am employed as an environmental reporter, and for an assignment I skied the Birkebeiner, a fifty-kilometer ski race in Wisconsin, which needed seven and a half hours. I enjoyed hosting individuals for supper and creating cakes for my friends’ birthdays. I attended museums and plays and got the chance to plunge into a cranberry bog for my occupation. I possessed a son whom I cherished immensely and a newborn requiring my care. This reality could not be mine.
Schlossberg reporting off the coast of Santa Barbara in 2022.Photograph by Lauren Justice
I resided in Columbia-Presbyterian for five weeks, and the oddity and sorrow of the assertions regarding my condition prompted me to discover the humor within the situation. I was uncertain what else to do. I concluded that everyone in the hospital was affected by Munchausen syndrome by proxy, and I served as their designated subject. It was a jest that I cherished more than others. Subsequently, bereft of hair and displaying a scrape on my face from a tumble, my joke was that I was a battered Voldemort.
There were mortifications and degradations. I experienced a postpartum hemorrhage and nearly succumbed to exsanguination, prior to my gynecologist saving me. (She had previously rescued me by noticing my hemogram and granting me the prospect of recovery. This instance appeared excessive.) Minor occurrences proved helpful, or somehow offered a feeling that all would be well. My son visited almost every day. Upon hearing that I favored Spindrift seltzer, friends delivered crates of it; in addition, they provided sleepwear, watercolor sets, and intriguing stories. Individuals created works of art to adorn my partitions. They supplied food at my parents’ dwelling, where George and the offspring had relocated. The nurses offered me warm coverings and permitted me to sit upon the floor of the elevated walkway beside my son, despite explicit restrictions against exiting my room. They devoured the news I procured; they disregarded my unauthorized kettle and toaster. They recounted anecdotes pertaining to their children, their romantic entanglements, and their inaugural journeys to Europe. I have never met a collection of individuals as proficient, benevolent, and empathetic, and as willing to attend to others as nurses. Nurses merit taking command.
Ultimately, my blast-cell count diminished, and I was granted the opportunity to undergo a treatment phase at home, alongside my family. My care was transferred to Memorial Sloan Kettering, an eminent center for bone-marrow transplants nationally. When hospitalization was required, my oncologist visited frequently, discussing my condition, naturally, in addition to foxhunting, that week’s source of irritation, and his feline companion. He is an Orthodox Jew and observes the Sabbath, yet he still replied to messages I impolitely sent during Saturdays. He has scoured the planet for novel therapies for me; he recognizes my reluctance to die and endeavors to impede it. My transplant specialist, invariably sporting a bow tie and greeting me with a robust salutation, is a concealed mad scientist masquerading as a preëminent authority on bone-marrow transplants, who guided me safely through a respiratory infection and didn’t react when I revealed a rosary and holy water, blessed by Pope Francis and dispatched from Rome. He regarded me and pronounced, “Vaya con Dios. Go with God.”
Subsequent to at-home chemotherapy, I was admitted to M.S.K. for an escalated dose of venom. I was subsequently ready for a transplant. My sister proved to be a compatible donor and provided her stem cells. (My brother was a partial match, but he persistently questioned every doctor whether a partial match could be superior, purely for speculation.) My sister maintained her arms extended for hours as physicians extracted blood from one, extracted and stored her stem cells, and redirected the blood back into the opposite arm.
The cells possessed an aroma reminiscent of condensed tomato bisque. As the transfusion commenced, I sneezed a dozen times and vomited. Subsequently, I waited—for my blood count to rebound, for my sister’s cells to mend and alter my organism. We contemplated whether I might inherit her allergy to bananas or her disposition. My hair initiated its loss and I donned kerchiefs to obscure my scalp, recalling, wistfully, each occasion I secured one, how admirable my hair once appeared; when my son visited, he wore them in solidarity. Within days, I experienced an inability to verbalize or ingest owing to mouth ulcers; sustenance transformed into powder upon my tongue.
George attended to every conceivable task for me. He conversed with all doctors and insurance agents I disinclined to converse with; he slept upon the medical center floor; he did not resent my frenzied steroid-induced outbursts lamenting my aversion to Schweppes ginger ale, while favoring Canada Dry. He would go home to tuck our children into bed and return to provide me with sustenance. I recognize that marriage to a physician may not be a universally attainable prospect, however, it holds substantial benefits. He is flawless, and I experience a sense of having been deprived and a profound sorrow, that I won’t persist in experiencing the splendid existence I had with this benevolent, humorous, engaging genius I successfully located.
My family and my siblings, as well, have been supporting my children and residing in my multiple hospital rooms practically daily for the past year and a half. They have steadfastly maintained their grip upon my hand while I have endured distress, endeavoring to mask their own anguish and grief to shield me. This has been an invaluable gift, even given that I apprehend their suffering daily. Throughout my life, I have tried to be well-behaved, functioning as a dedicated pupil and sibling and a virtuous daughter, as well as safeguarding my maternal figure and avoiding any causes of unhappiness. Now I have injected a new tragedy into her life, as well as our family’s, and there’s nothing I can accomplish to impede it.
I returned home following fifty days at Memorial Sloan Kettering. The transplantation had induced remission, however, I possessed an absence of immune defense, necessitating the repetition of all pediatric immunizations. I commenced a new regimen of chemotherapy to suppress the malignancy. I relapsed. My transplantation specialist declared that leukemia involving my particular mutation “is prone to recurrence.”
In January, I enrolled within a study of CAR-T-cell therapy, a form of immunotherapy that has displayed effectiveness versus select hematologic cancers. Researchers were due to engineer my sister’s T-cells, guiding them to attack malignant formations. It was constantly dusk outside my infirmary window. I received more chemotherapy; after the CAR-T treatment, I contracted cytokine-release syndrome, where a turbulent inflammation left me incapable of breathing without concentrated oxygen. My pulmonary organs brimmed with fluid, my liver experienced distress, and I consistently teetered upon the precipice of intensive care. Weeks later, I returned to a state of remission, though I had shed nearly twenty pounds. The medical staff exhibited contentment with the outcome: I had outperformed several participants within the study, which strained credulity, nevertheless, I was discharged.
It didn’t genuinely feel like a homecoming: I needed to attend the outpatient sector routinely, to address infections or obtain transfusions, stationed within a recliner repetitively, awaiting word about potential return to the hospital. In early April, I did return, albeit on abbreviated notice, for my second transplantation. I harbored the hope that this procedure would succeed. Indeed, I made the decision it would work. I obediently transcribed Seamus Heaney’s poetry into my notebook: “The Cure at Troy” (“Believe that a further shore / Is reachable from here. / Believe in miracles / And cures and healing wells.”) and “The Gravel Walks” (“So walk on air against your better judgement”). I endeavored to conduct myself as the ideal patient: assuming I executed everything appropriately, exhibiting politeness to all at all instances, as well as requiring minimal assistance or encountering dilemmas, then it would prove effective.
This time, I received an unrelated donor, on the grounds that the cells would differ from those of my sister and myself, hence better furnished to challenge the cancer. All my knowledge of the donor indicated a man in his twenties from the Pacific Northwest. I envisaged a Portland lumberjack or a Seattle tech entrepreneur. Irrespective, I wished to express my gratitude. I underwent remission once more; I relapsed once more. I joined a subsequent clinical trial. I was hospitalized twice more—weeks absent from my recollection, during which I shed another ten pounds. Initially, I contracted graft-versus-host ailment, whereby novel cells aggress against mature ones, then, towards the latter stages of September, I was afflicted by a form of Epstein-Barr virus which overwhelmed my renal system. Subsequent to returning home weeks later, I underwent a process of relearning how to move and lacked the capacity to lift my children. The muscular structures of my legs atrophied, and my limbs seemed fashioned of bone.
During the latest clinical trial, my physician revealed that he could maintain my survival for approximately a year. My initial sentiment conveyed that my progeny, whose countenances exist perpetually within my eyelids, would lack recollection of me. My son may retain faint memories, however, he’ll possibly begin conflating them with images observed or narratives heard. I didn’t genuinely attend to my daughter—I couldn’t adjust her diaper or cleanse her or provide her with sustenance, because of the threat of infection subsequent to my transplantations. I existed in a state of absence for approximately half of her inaugural year. I possess uncertainty pertaining to whom, truthfully, she believes me to be, and irrespective of whether she will perceive or recall, following my departure, that I am her maternal figure.
Schlossberg and George Moran at their wedding-rehearsal dinner, in 2017.Photograph by Elizabeth Cecil
In parallel, during CAR-T treatment, a methodology formulated across decades possessing millions of dollars of governmental financing, my cousin, Robert F. Kennedy, Jr., engaged in the procedure of nomination and certification as the Secretary of Health and Human Services. In association with my treatment, he has performed on the national platform: originally classified as a Democrat, he initiated a presidential campaign as an Independent, though predominately as a source of embarrassment to myself as well as my intimate family.
During August, 2024, he suspended his electioneering and endorsed Donald Trump, whose proclamation was that he would “allow Bobby to roam free” in matters of health. My mother composed an missive to the Senate, in the attempt to impede his validation; my brother had been vocal regarding refuting his falsehoods for months. I perceived from my hospital enclosure as Bobby, in defiance of rationale and prudence, procured acceptance for the position, albeit possessing no antecedent practice within medicine, community health, or the administration.
Quickly, the healthcare infrastructure I relied upon appeared under pressure, unstable. Medical practitioners and researchers within Columbia, incorporating George, lacked assurance pertaining to their capacity to sustain ongoing investigations, or even to retain employment. (Columbia assumed status as one of the Trump Administration’s primary objectives within its campaign opposing alleged antisemitism upon colleges; during May, the institution dismissed one hundred eighty researchers subsequent to federal-funding curtailments.) Assuming George pursued alternate employment, we couldn’t know if we would achieve insurance qualification, as a consequence of my antecedent ailment. Bobby is a recognized skeptic regarding vaccinations, and a primary apprehension centered on the possible impediment concerning my capacity to acquire them again, leading to a requirement to spend the remainder of my lifespan immunocompromised, accompanied by cancer survivors in the millions, as well as young children, and aged persons. Bobby has stated, “There’s no vaccine that is safe and effective.” Bobby possibly lacks recall of the millions incapacitated or terminated by polio ahead of vaccine accessibility. My paternal figure, having grown up within New York City during the nineteen-forties and fifties, does remember. Presently, I solicited his perspectives regarding his vaccination experience. He declared the sensation similar to that of liberation.
As I devoted ever greater segments of my duration through the provision of medical practitioners, nurses, and researchers endeavoring to improve the existences of others, I noted as Bobby curtailed approximately half a billion dollars intended for investigations toward mRNA vaccines, a technology displaying applicability versus select cancers; slashing billions regarding financing directed at the National Institutes of Health, the globe’s chief financial advocate for medical investigations; in addition to threatening displacement pertaining to the panel of medical authorities assigned to recommend preventive cancer diagnostics. Hundreds of grants and clinical trials awarded by the N.I.H. were cancelled, impacting thousands of patients. I held worries related to funding allocated to leukemia and bone-marrow research at Memorial Sloan Kettering. My concerns related to the trials constituting my sole avenue to remission. Early during my ailment, encompassing my postpartum hemorrhage, a measure of misoprostol had been assigned to assist in stopping the extravasation of blood. This drug comprises an element of medication abortion, currently “subject to review” by the Food and Drug Administration, attributable to Bobby’s influence. I shudder upon contemplating potential circumstances assuming its lack of prompt accessibility to myself as well as the millions of other females that require it in order to save their existences or secure the care they are deserving of.
My strategy, had I not succumbed to ailment, concerned the writing of a volume regarding the oceanic environment—its depletion, as well as the capabilities offered. Through therapy, my recognition broadened to feature a chemotherapy drug, cytarabine, which owes its origin to an ocean specimen: a sponge residing within the Caribbean Sea, Tectitethya crypta. This revelation transpired through scientists at the University of California, Berkeley, initially synthesizing the drug during 1959, and virtually certain to have functioned through governmental finance, the identical component Bobby has already diminished.
I decline to compose pertaining to cytarabine. I will lack the means to ascertain the realization of our capacity to harness the strength of the marine systems, or potentially permitting them to boil and transform into a receptacle of trash. My son possesses knowledge of my status as a writer and a chronicler regarding our planet. I make routine reminders since having grown ill, intending that he recognizes my identity as something beyond merely an afflicted individual.
When looking at him, I exert effort to replete my brain with memories. With what frequency may I re-experience the video capturing his attempts at articulating “Anna Karenina”? What of the case whereby I conveyed to him an absence of wanting ice cream originating from the ice-cream truck, and he embraced me, patting me upon my dorsal area, and stating, “I understand, buddy, I understand”? I envision the initial instance featuring my return home from the medical establishment. He proceeded inside my bathing area, regarded me, and enunciated, “It’s exceptionally pleasing to encounter you inside here.”
In parallel, there’s my daughter, her scarlet wavy locks replicating a flame, narrowing her ocular organs and emitting a vacant-toothed grin successive to consuming a beverage of seltzer. She stamps in bright-yellow boots all over the household, portraying a character as if speaking upon my mother’s portable telephone, a strand of fake pearls around her neck, sans trousers, chuckling and hurrying away from any seeking to secure her. She asks us to activate James Brown’s “I Got the Feelin’ ” through collecting a wireless speaker and stating, “Baby, baby.”
Predominantly, I exert effort to exist and accompany them currently. Yet residing within the present manifests a superior level of challenge than originally conceived, so I grant the recollections authorization to arrive and disappear. Numerous of these originate from my childhood, yielding a perception of simultaneously observing myself and my children developing. Periodically, I deceive myself into believing I’ll recall this eternally, I’ll recall this while expired. Demonstrably, I won’t. Provided my ignorance regarding the experience of death and the lack of personnel to convey subsequent occasions, I’ll persist in portraying these. I will persist in endeavoring to recollect. ♦
Tatiana Schlossberg at her parents’ home in New York City.Photograph by Thea Traff for The New Yorker
Sourse: newyorker.com
