This post was originally published on Elephants and Tea, a magazine written for and by the AYA cancer community telling their story in their own words.
This March is both my 27th birthday and my one-year “birth” day from when I received CAR-T immunotherapy. I had relapsed twice at that point and could hardly handle more chemotherapy. Now nearly one year later, I remain in remission and feel incredibly lucky.
I was first diagnosed with primary mediastinal large B-cell lymphoma in January 2018, after a month of experiencing chest pain. I had just finished my first semester of my master’s degree and then took a medical leave of absence for six cycles of R-CHOP. Things were looking good, as I was in remission and rewarded a fellowship to study in Taiwan. I just wanted to move on. Little did I know that just months later, I would relapse and have to cut my fellowship short, fleeing back to Maryland for salvage chemotherapy, R-ICE. The plan was to wait for a match for a stem cell transplant.
But it was too late. I had relapsed again, and it felt absolutely devastating. In hindsight, however, I believe this was a blessing in disguise, as I decided to take charge of my treatment. Rather than go with an intense treatment plan of more chemotherapy and then radiation, only to hope for a chance at the transplant again, I sought the help of a CAR-T oncologist at the University of Maryland Medical Center.
Soon enough, I was being admitted to start what ended up being nearly two weeks in the hospital, with two days in the ICU—one of which on my 26th birthday. The treatment’s side effects were not nice to me, but in the end, the killer T cells worked. My own immune system had been awoken. As Charles Graeber emphasizes in The Breakthrough, the potential of the immune system to kill cancer took a while for most cancer researchers to accept, especially over chemotherapy and radiation. Even when growing evidence clearly supported immunotherapy’s power, Graeber writes, “[s]cientists are people; they have beliefs, and are personally invested in them. And that can sometimes lead to unintentional and unconscious bias, and a sort of intellectual blindness. It can, in other words, make even scientists unscientific.”
I am grateful for the scientists who believed in and still believes in immunotherapy as the breakthrough. Their persistence in research reinforces two core lessons that cancer has taught me: 1) in the face of adversity, we are much more resilient than we may think, and 2) hope does help and comes in various forms.
My loved ones were the beacon of hope that I desperately needed throughout this journey. Throughout this journey, my parents served as the best caregivers I could ever ask for. They took turns staying with me at the hospital, as well as attending every single appointment I had and continue to have. Equally important, I had my boyfriend who is now my husband. We met just months before my diagnosis in Taiwan (would you believe, via a dating app), and while most of our relationship had been long-distance during my treatment, he has made every effort to show support. We now live together and study in the Washington, D.C. metro area, with hopes of giving back to the community and serving fellow cancer patients and survivors. More specifically, during my final semester as a master’s candidate at Georgetown University, I am working on a nonprofit social enterprise to revolutionize cancer patient care.
My inspiration comes from encountering one thoughtful care package left by a former patient in the Bone Marrow Transplant/CAR-T ward upon being admitted for T-cell infusion. Depleted as I was from all the chemotherapy, this one package somehow gave me the energy to stay hopeful. “When I’m out of here, I’m going to do the same,” I resolved. Importantly, it has made me reflect on how patient care during and after treatment, especially for young adults like myself, desperately needs more attention. Whether the issues are about fertility or careers, finances or mental distress, patients, survivors, and their caregivers all deserve better. We need both hope and system change.
Fortunately, nonprofit organizations such as Livestrong are recognizing the gap between care for the patient within the hospital and care outside the hospital. In 2014, it announced Livestrong Cancer Institutes in Austin, Texas, with a mission to create and serve as an innovative model on changing how cancer patients are cared for. This development is long overdue, and am very much looking forward to seeing its model being adopted nationally, if not worldwide.
Cancer has made me think about what I would have never thought possible. Not only have I survived months and months of horror (does it ever end?), but I truly believe that we can revolutionize the system of cancer care. Just as treating cancer should go beyond chemotherapy, cancer care goes beyond being handed a “patient education” binder of twenty-year-old faded printouts on managing side effects. It’s time for change.