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Illness Narrative

Phoebe grew up dancing for countless of hours at her local dance studio, a place she called her second home. Anyone watching her could see how passionate she was about moving and expressing her emotions through graceful choreography. It was at this very studio on a day in the middle of March 2017 while she had been teaching the next generation of dancers that she became fully aware of how persistently exhausted she was and how alarmingly quickly her appetite had decreased the past couple days. After a blood test and a very urgent call from her doctor to get to the hospital immediately, Phoebe was cast away in an ambulance to be diagnosed with the rare Philadelphia chromosome-positive acute myeloid leukemia.

In the beginning of my dance career, I admired Phoebe for her readiness to accept the physical and mental challenge of competing several solo dances each competition season. I remember seeing her cry due to frustration and muscle pain in the middle of her daily four hour rehearsal sessions, wondering how she could still pick herself up and make her movements so fluid, the pain masked by her seamless effortlessness and grace. Finally, when I grew older, I had the honor to be trained by her, my dance inspiration. She eventually became my inspiration beyond dance. Seeing her balance teaching, being part of a college dance team, commuting, and taking care of her family, she became a strong figure in my life. It was crushing to see the tough Phoebe I knew crumble under the malignant, abnormal growth of white blood cells that is leukemia. The leukemia Phoebe was diagnosed with was a special case. In the history of cancer, the study of the chronic version of this leukemia allowed for the discovery that unique, specific mutations existed in distinct forms of cancer. The discovery and foundation of the leukemia she had, as stated by Siddhartha Mukherjee in his novel The Emperor of All Maladies was due to a “genetic event termed a translocation—the flip-flop transposition of two pieces of chromosome” (2011, p. 366). This caused Phoebe’s bone marrow blood cells to multiply uncontrollably, disrupting her blood count. Thus, it was decided that the hospital needed to find her a bone marrow donor and in the meanwhile she would have to undergo chemotherapy intravenously to destroy her leukemia cells and keep it within boundaries.

Phoebe outwardly took in her diagnosis and treatment with the grace and strength she had always presented herself with. Her fearlessness throughout her journey allowed me at times to blindly and joyously think about and discuss with her the adventures we were going to have when she was out of City of Hope Hospital, when her leukemia would be in remission. However, Phoebe’s journey with battling leukemia was not an upward linear progression as my naivety allowed me to hope for and believe in. Her journey of living with an illness consisted of high jumps with hard landings, falls out of pirouettes when we thought she was going to stick the landing, and sashays that travelled her back and forth from the edges of health to the depths of sickness.

The first round of chemotherapy made her nauseous and her legs and hands swelled up after hours of lying in bed, as she was unable to walk around without feeling the need to throw up. There were times Phoebe would decline my family’s visits due to her throbbing headaches that were a result of oxygen deprivation caused by the treatment. Chemotherapy affected her bone marrow’s ability to produce a sufficient supply of blood cells; therefore, as Mukherjee reveals happens in leukemia patients, her “red cell count had dipped so low that her blood was unable to carry its full supply of oxygen” (2011, p. 18). The second round of chemotherapy made her beautiful, black, long hair fall which was also due to the chemotherapy which targets leukemia cells but interferes with other fast-growing cells like those in the hair. When I saw her, I could not help but feel my heart drop as I recalled how just a couple weeks ago we were discussing how her long hair that curled perfectly was her favorite asset, and how she was planning to dye it blonde again. But Phoebe did not seem devastated by the loss of her hair. She exclaimed that she was going to shave it to rock a new look.

I could see that Phoebe had adjusted to disregard the things that no longer held as much weight in importance, focusing on the most essential things that mattered to her just as professor of neurology, Oliver Sacks, did when he was diagnosed with ocular melanoma, which he reveals in his article “My Own Life” when he says, “[he felt] a sudden clear focus and perspective. There [was] no time for anything inessential” (2015). There was no doubt that Phoebe struggled with finding what mattered to her and how to plan her life around the illness that had caused her to stop in her tracks of living life very abruptly. She began to reconstruct her life by making a couple of phone calls to her college. It was decided that she would return to her studies in a year when hopefully, the malignant growth of cells in her blood would be successfully stopped.

There was a darker side to Phoebe’s illness experience. Phoebe struggled just as Paul Kalanithi explained in his novel When Breath Becomes Air, he “struggled, while facing [his] own death, to rebuild [his] old life—or perhaps find a new one” (2016, p. 139). Recognizing that she would not be able to give into the physical demands of dance as her body fought to stay alive, she informed her college dance team that she would no longer be part of the team. Even more heartbreaking was when she asked the director to inform her students, the ones she had been training since they were toddlers, that she would no longer be teaching them. With these decisions, Phoebe often battled with the same questions Kalanithi pondered upon, “who would I be, going forward, and for how long? …Who could, or should, I be?” (2016, p. 147). After weeks of restlessness while being stuck in the hospital, Phoebe settled with the idea of possibly finding a job where she would be allowed to work from home, which her doctor promised to allow her to return to for longer than a few weeks after her blood count reached a normal amount following the third round of chemotherapy.

Towards the end of the summer of 2017, her blood count numbers finally did reach normal standards and a relieved Phoebe moved back home, only returning to City of Hope for routine checkups to make sure the leukemia cells were not spreading. Phoebe planned a small gathering to celebrate with her dearest friends and family members. I distinctly remember Phoebe dressed in black, wearing a surgical face mask from the hospital to prevent from contracting infections, and having to screen the food that was being served to make sure it fit the diet regulations her oncologist gave her. During the celebration, Phoebe announced that the doctors at last, had found her a bone marrow match and she would soon begin to have bone marrow transplants. This was one of the high jumps of Phoebe’s journey.

It was rapidly followed by a hard fall. Phoebe underwent four bone marrow transplants, and each was rejected by her body. Her body deteriorated swiftly after each failed transplant and she was transferred to the ICU to be put on life support. Instead of informing us of her downfall and nearing death, Phoebe sent each of my family members a letter that spoke of the next joyful reunion we would have with her. Phoebe wanted us to still feel the hope of her getting through and surviving the battle with leukemia. She wanted us to continue feeling the joy that she had lost as she was informed again and again that the transplants failed.

Phoebe died on January 7, 2018, the day before my first day of college. In the letter she wrote to me, she asked for me to promise I would swipe her into the dining hall. Why did she promise us the creation of future memories with her if she knew she was running out of time? Every word that she had written served a purpose, and I wonder what went through her mind that prompted her to keep our hopes alive as hers died. I believe she pondered upon the same question Kalanithi repeatedly asked himself, “the question of what makes human life meaningful, even in the face of death” (2016, p. 42). I realized that perhaps she found the last days of her life meaningful by instilling a hope in her loved ones that she would live and that we would see her again to form more memories with her. Perhaps that was the only thing she could do or perhaps that’s all she wanted to do for the ones dearest to her: say the words that would ease our hearts and pain to allow us to imagine what could be. I think it was brave and noble of her to do this for us despite her losing hope for herself. She wanted to leave this world silently, living in the minds of the those who loved her, and in the memories we were imagining would happen, the ones she promised us, the ones she told us she was looking forward to. In her last days of life, she chose to instill joy and to leave a trail of hope.

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