The Power of a Gift

Originally published on The Patient Empowerment Network.

It sounds silly to think about stuffed animals—as a then-24-year-old—or anything really giving much comfort as chemotherapy drugs flowed through my veins, but as I have come to realize over two relapses is that the gesture matters. It is as simple as that.

Whether it was my first time receiving chemotherapy or my first relapse, it gave me hope knowing that people, even strangers, cared about my well-being. By the third time around, I was barely hanging on. Chemotherapy and radiation had drained me. I had showed up to the hospital looking and feeling like death.

My “Birth” Day

I call it my absolute worst and best day: Day 0, when I received my CAR T-cells in March 2019. It was the worst, because the two prior days of pre-conditioning chemotherapy had left me in a terrible state. Getting out of bed that morning, I had zero appetite, zero energy, and zero hope. I remember feeling so mentally and physically exhausted that I could barely stay standing while checking in for admission.

Upon being admitted, however, I noticed a stuffed green grocery bag tied at the handles. A nurse had placed the bag in my room, but rather than it be a part of an official hospital welcome, it instead came from a former patient. Soon, I was preoccupied with uncovering all the thoughtful gifts left by this stranger, while reading the hopeful note about how she had been in my shoes one year prior and was well again. What an inspiration this became!

I felt myself starting to regain strength. Then when the mutant T-cells, which had been re-engineered in a lab in California to attack my cancer cells, were being infused back into me, it was literally giving me a new life. On the outside, it was entirely uneventful—think of a typical blood infusion or draw. There was also a medical student who stayed to observe and chat with me through it, and it was that distraction with the sweet care package that allowed me to see that life would keep going. I would keep going.

Paying the Kindness Forward

Such an experience is what motivated me to start my own nonprofit and pay forward the kindness that I had received. (The next hardest moment was on my birthday a few days later, when the side effects of those T-cells landed me in the ICU for two days. What a way to celebrate, huh?)

In fact, completing graduate school during a global pandemic, while founding a nonprofit that helps others affected by cancer have become my greatest accomplishments since my diagnosis. Kits to Heart distributes thoughtfully designed, curated cancer care kits at hospitals and cancer centers in the Baltimore/Washington Metro Area community, as well as ships directly to patients nationwide. I have used my experiences and interactions with patients and social workers to pack the kits with informational resources and comforting products compatible with various cancer treatments. Just like receiving a care package from a survivor gave me hope and inspiration to pay it forward, we can inspire hope at the most difficult moments of treatments.

After Treatments

After undergoing more than anyone should ever have to, life is undoubtedly different. I go on more walks and hikes, for example. I have always enjoyed walking and taking in my surroundings, especially while abroad—but being on the verge of death multiple times tends to change your perspective on simple things like being able to take a leisurely stroll.

I also find joy by giving joy, especially to others affected by cancer. The very act of giving kindness reminds me that I am alive and reinforces the immense gratitude I have. From the scientists who believed in our own immune systems and pursued the research that resulted in CAR T-cell therapy today, to my resilient caregivers, I am thankful.

Yet, not everyone is fortunate enough to have strong support systems, let alone a ride to and from their cancer treatments. It is why I strongly advocate for giving joy in any way that you can when a loved one is diagnosed. Cancer is a lonely enough journey, full of anxiety and uncertainty. It hurts when friends or relatives stay silent during such a tough period. But I get it—given the circumstances, some simply have no idea how to help, while hospitals are not able to address all physical and psychosocial needs of patients with cancer.

These are persistent problems related to cancer care, but as long as I am able to, I hope that my story and efforts are able to provide hope and inspiration to those who need it. Especially during these times, a gift and the message it brings—that you are loved—mean so much. And for me, cancer has certainly taught me how to love and be loved.


Recommended Reading

Charles Graeber’s The Breakthrough: Immunotherapy and the Race to Cure Cancer

Confronting Tough Questions After Cancer

Originally published in Conquer magazine.

As a 27-year-old, 3-time cancer alumna (I prefer this term to “survivor”), I have been reflecting on my relationships with my caregivers and loved ones. Below are some of the questions I asked myself.

How Important of a Role Did Your Caregivers Play During Treatment?

The thing about being diagnosed with cancer in your twenties is that your parents tend to be not too far from their role in taking care of you. Sure, you had a couple of years away for college and maybe a first job, but parents do not stop being caregivers.

Whether it was the first time of getting chemotherapy or the last, I felt much too sick to complete my daily tasks, let alone drive myself to and from treatments. I relied on my parents to cook my meals and make sure I stayed hydrated. When I was hospitalized for almost 2 weeks to undergo CAR T-cell immunotherapy, having my parents take rounds to stay with me in the hospital provided physical as well as psychological support.

It may seem funny to say this, but I am sure that I would have lost much more weight than I did, had it not been for my mom’s home-cooked meals and groceries from organic markets. Although nurses do their job, nothing compares to having your mother by your side in the hospital while you vomit for the third time on your birthday.

How Do You Think Cancer Has Affected Your Caregivers?

Thinking about the impact of cancer on my caregivers is quite difficult. After all, cancer itself is difficult, but it is important to remember that caregivers need support, as well. I would like to think that we have all become much more resilient. The truth is that humans learn to adapt, we learn to cope, and we learn to adjust.

Much like the effects of this coronavirus pandemic, cancer and everything that comes with it eventually become part of a new normal. That is not to say that it becomes any easier. A cancer diagnosis indeed causes distress and severe burdens for patients and for their loved ones.

During treatment, my caregivers and I knew that the main goal was to keep me alive, so there was little room left to consider how we were handling everything mentally. My parents are small business owners, so they were able to be a little more flexible with their work schedules, making sure to accompany me to every appointment. I am sure there were sleepless, tearful nights for my parents, who have always been very good at hiding from me their emotions and any hardships.

Now that treatment is over, it does occasionally strike me that they hid their hardship so well. I think that no matter how bad it got, just seeing me continue to endure was enough to keep them going. I don’t like to think that it was bravery, because it implies that others who have lost “the fight” were not strong or brave enough. Patients with cancer often don’t have a choice in this fight, and neither do caregivers.

How Did Cancer Affect Your Loved Ones and Your Relationships with Them?

I have developed a much stronger bond with my loved ones. At the same time, cancer and 2 relapses within 2 years have made me re-evaluate my life goals. As a person with serious wanderlust and a master’s degree in Asian studies, I had always dreamed of living and working abroad.

After the first remission of my non-Hodgkin lymphoma, I didn’t allow cancer to hold me back from working to achieve this dream, and I accepted a yearlong fellowship to study in Taiwan. As fate would have it, the cancer relapsed within months of arriving in Taiwan, cutting the fellowship short and forcing me to flee back home for treatment. (To say I was on the verge of death is not an understatement.)

In hindsight, I don’t regret this decision, because it was my last opportunity to experience life abroad for the foreseeable future. Considering everything that my caregivers have done for me, as well as being at an age when we are at the tail end of time spent with our parents, I have decided to settle down close to my parents, with my husband being in the process of immigrating here to be with me (yes, he’s a keeper).

One day, I do hope to travel again, but until then, I am more than happy to spend time with my parents and my husband here in the United States. I owe them my life, and cancer has changed our relationships for the better, bringing us closer than we have ever been.

Any Suggestions for Patients and Caregivers Seeking Support?

I attended a therapy session after the first relapse of my disease, but there was not enough time to attend a group session before I was admitted to the hospital for the CAR T-cell therapy. I started participating in cancer support groups earlier this year, which was around the same time that I began to develop my idea for Kits to Heart, a now-certified non-profit organization that gives cancer care kits to patients throughout the United States.

I wanted to be more actively involved in the cancer community, and I think that support groups are very valuable, even if they are held virtually. Moreover, being able to share my story and working to help other patients have helped me to readjust to life. This reminds me of how far I have come.

Caregivers also have their own support groups, so I would highly recommend finding those communities and sharing experiences with others. The resources are out there, and I hope that more patients take advantage of them.

As I was lucky to have experienced, adequate psychosocial and financial support do have a huge impact on our overall well-being. To anyone facing cancer now, know that this too will likely pass. You are not alone.

Revolutionizing Patient Care – Immunotherapy

Originally published in Elephants and Tea magazine.

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.

Celebrating Birth Days

Originally published on Livestrong.

This March will be 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 would 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, to say the least. 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, 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.

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Hsuan proposed. I said yes!

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, and while most of our relationship had been long- distance during my treatment, he has made every effort to show support (I bragged about him and my parents a lot on my blog during my journey: soniasu.com). We now live together and study in the DC 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.

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Hsuan and I celebrated our two-year anniversary

Stupid Cancer Stories: Stronger Together

Originally published on Stupid Cancer.

This time last year, I had finally returned home from my eleven-day stay in the hospital. Two of those days were in the ICU.

The night before entering the ICU, my body was starting to prove just how powerful mutant T-cells could be.

Hours later, I woke up, rushing to the bathroom to vomit. My mom must have pitied me. After all, just two hours prior, I had turned 26. The vomit kept coming.

The rest of my 26th birthday was a blur. I think the nurses tried telling me that I would be transferred to the ICU. I remember flashes of my mom and nurses pulling my limp body up from the bed to pee bedside. Did I eat? The next time I was fully conscious, it was the day after.

In the weeks after discharge, my mom would lightheartedly relay the story of how I hilariously failed the toxicity assessment questions, which were given every hour or two. Not only did I scribble illegible sentences, but I also was incredibly insistent on where I was, jumbling nonsense about my high school. (I do recall having a feeling of frustration at some point.) I can only imagine her laughter — and maybe horror — in the hospital room, while witnessing her delirious daughter give totally incorrect answers with such confidence. She had some pride sharing this story.

One year later — this global pandemic aside, I am in a much better place. My scans two weeks ago were clear! And during Adolescent and Young Adult (AYA) Cancer Awareness Week, it is important to keep in mind that cancer can be a really lonely journey, especially for younger patients.

When a medical student was asking me questions during CAR-T cell infusion, I realized I still had pent-up resentment over people I knew who never reached out. She had wondered how people should respond when their loved ones get diagnosed with cancer, and the first thing I thought of was simply to reach out.

Silence, especially among people whom you thought were your friends, only adds to the heartbreak, frustration, and confusion that AYA cancer patients already feel.

I know what it’s like to go through treatment not once, not twice, but three times. Let me just say that it never gets easier, but with the right support networks, the journey does not have to be quite so lonely. Organizations such as Stupid Cancer, Livestrong, Elephants and Tea, and Ulman Foundation are working to focus more on patient care outside the hospital. And after being surprised by a care package from a stranger, I am now also working toward paying it forward and spreading the hope that that stranger gave me.

Despite everything that is going on, we are somehow still here. We can get through this together.