Revolutionizing Patient Care: Immunotherapy

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.

A Long Way from ICU

This time last year, I was on night five of my hospital stay. Feverish, my body was starting to prove just how powerful the mutant T-cells could be.

Hours later, I woke up, rushing to the bathroom to vomit. 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. “Atholton! Atholton 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—freakin’ global pandemic aside, I am in a much better place. My scans last week were clear! Much of this past year has been about recovery and adjusting to a new normal. As I mentioned in my recent post, this self-quarantine is nothing to cancer patients and survivors. We can get through this.

It has been a long journey to get here, and although the world is falling apart, somehow we are still here.

Thoughts on Covid-19

Is it really still 2020?

Never could I (nor anyone, unless you’re Bill Gates) could have known in December 2019, when I published my last post, that we would be socially distancing and hoarding more toilet paper than actual food, during a global pandemic that most developed countries have been not only failing to take seriously, but also struggling to suppress.

For cancer patients and survivors like myself, the precautions we all now must take sound familiar.

Three years ago, I—like most healthy people—had never heard of N95 masks or even the term “immunocompromised.” I had not yet known that this latter term described those who had to take precautionary measures just to be safe and healthy. These include avoiding raw food (including sushi) and handshakes; wearing masks in public; regularly sanitizing hands and surfaces; and generally staying extra vigilant to potential sources of infections. Now such measures apply to us all.

Georgetown, like most schools, have switched to “virtual learning” for the remainder of the semester. This being my last, commencement has also been postponed—but as long as I will still graduate on time, I’m okay with being socially distant. My research job has also implemented company-wide teleworking.

It’s interesting to see how countries like Taiwan, Singapore, South Korea, and Japan, have all managed to control Covid-19 much better than the United States (let’s not get into Europe). Is it surprising? I’m not so sure.

It’s also both heartbreaking and infuriating to see anti-Asian racism spreading like a virus itself.

What’s even more infuriating is hearing both undergraduate and graduate students, who are otherwise incredibly intelligent, have no disregard for the virus. Upon returning from their spring break trips, they shared how they still traveled to Europe, the Bahamas, Hawaii, Orlando, and elsewhere. The student who went to Hawaii now says she hasn’t been feeling that well.

Even the week or two leading up to spring break, these classmates would downplay the virus, proclaiming it “only affects the weak and elderly,” implying that they, brimming with their invincible fountain of youth, had no role to play and would thus not be affected. Do they not have parents? Better question, where is their empathy and sense of responsibility?

Yesterday, Georgetown even had to send an email on new directives and enhanced sanctions, after receiving reports on “students continuing to host social gatherings during this time.”

Thankfully, my family members seem to have more sense than Georgetown students and are practicing social distancing. Perhaps part of why they have felt more of an impact is because business has basically come to a halt, given their line of work. Small businesses are struggling, and I strongly urge anyone who can to continue supporting them, whether it’s by buying gift cards to be used later, or ordering carryout from your favorite restaurants.

After nearly a year of preparation, my sister had planned to launch her athleisure line this month, and with everything going on, she is rethinking her strategy. Nonetheless, please follow her for updates on Instagram and/or by email. I am so proud of her.

How is life for you? Where are you staying? Another update to come soon regarding my own health (good news). Until then, stay responsible, stay healthy, and stay sane. This, too, shall pass.

End of a Decade

With the start of a new decade fast approaching, I would describe the 2010s as the following: traumatic—oh, man, was it traumatic, yet miraculously full of hope.

For one, the decade both began and ended with cancer, with my maternal grandpa and grandma succumbing to the terrible disease in the early part of the decade, and yours truly experiencing multiple near-death encounters around late 2017 through early 2019. As I have done since 2012, I have written annual reviews, but I did not publish my 2018 one, because it was just that shitty: diagnosed with primary mediastinal large B-cell lymphoma, relapsed while overseas—only to literally barely make it back alive for salvage chemo, awaited a bone marrow transplant that never ended up happening, since I, yes, relapsed again. I also had a tube inserted through a jugular vein in my neck for, at the time, an unknown amount of time (ended up being half a year). It didn’t seem quite so holiday cheery to publish what was basically a dying girl’s wish to find a match for the transplant.

There is something darkly humorous about how cancer has became one of the easier things to write and to talk about, as compared to reflecting on Sonia five or ten years ago. I say so because I do not feel proud of the kind of person I was—in fact, I feel ashamed, embarrassed, and regretful. There is not much use in reflecting on the details, but cancer has literally and figuratively given me a new life. A blank slate, to wipe clean the memories of the past, to be replaced by ones that were arguably worse yet still less vulnerable to self-criticism.

And yet, while it seems like I had no control over my cancer, my second (and FINAL) relapse earlier this year made me realize I did have a choice. A second opinion.

Although the urgency and shock of it all during the year of my diagnosis made it unlikely for me to seek, let alone consider, my options other than treatment at Johns Hopkins, hearing the plan my Johns Hopkins oncologist had in mind for me upon yet another relapse in 2019 made me incredibly fearful. Their plans had failed me, and I came to despise my oncologist and his team for how they ended up handling my case, as if I would be just another statistic.

I basically fled to University of Maryland Medical Center, where I made the fateful decision to switch treatments and embark on the journey that is CAR-T. And well, I’m still alive. I very likely would not have been able to say the same if I had stayed with my former oncologist.

Of course, this meant I stayed in the ICU for my 26th birthday, due to the neurological side effects of CAR-T, but now 9 months after treatment, I remain in remission.

As deeply as the 2010s have scarred me, I met my fiancé, right before my diagnosis. I didn’t feel it at the time, but I eventually came to see his appearance in my life as part of some sort of invisible hand. While two relapses somehow has not yet converted me to a devout believer in any religion, I do believe that something is out there, watching over me and giving me Hsuan. He, in turn, has given me all the hope for a future together and, most importantly, the hope to keep going in times when everything told me to give up all hope.

I also am grateful for my family and family friends, who believe in me and continue to support me.

Ultimately, the 2010s was a decade of resilience, and I feel thankful to be healthy and happy again.

Happy holidays, readers, and wishing you a great 2020.

Big News

HSUAN AND SONIA ARE ENGAGED!

Beautiful.

At last, I can call this man my fiancé, a more fitting term to describe a relationship in which the “boyfriend/girlfriend” labels seemed somehow inadequate. As my friends and family know, Hsuan has been beyond “just” a boyfriend. He has been my best friend, a loving caregiver, and an incredibly understanding partner. I feel so lucky :’)

Post-kneel hug.

As for the wedding, plans will likely not seriously start until closer to my graduation in the spring—but you can bet I’ll be spending some of my spare time dreaming about it. Since Hsuan’s family and friends are in Taiwan, we will also try to plan a ceremony back in his hometown of Kaohsiung. At some point.

Needless to say, I am ecstatic. Hsuan keeps saying I have not stopped smiling since. ❤

Wishing everyone a happy Thanksgiving!

All Clear

Showing off my Urban Outfitters dress that was $4.99 on sale.

It has been six months since my CAR-T infusion, and the PET/CT today confirmed that I remain in remission!

After today, I no longer have monthly visits and now plan to return every three months—which puts my next checkup at after this semester before Christmas.

The staff at the hospital say they hardly recognize me now with hair and without a hat. I suppose that’s a good thing.

What a rollercoaster of a year! There is so much to look forward to this next year, and I am so thankful for another chance at life.

Every good checkup feels like confirmation that everything will be okay, that everything will end up working out for the better after all, that I deserve to be here. This past half year alone has presented more than enough nadirs—from phantom chest pains to high fevers, from months of excess phlegm to a cough here and there. With every health issue that arises, no matter how minor, I fear the worst. And I don’t think that fear will ever be gone. It is a burden I carry.

But as my mom always tells me, I am lucky. We are lucky. ❤

The Beginning

After a brief hiatus as I tried re-adapting to the workload and pressures of graduate school, welcome back!

I am blogging from Riggs Library at Georgetown, a quite beautiful space fit for reading, studying, and even spilling my thoughts on these first few weeks of school, apparently.

My first week went terribly. I caught the flu, no thanks to treatment this past year preventing me from getting a flu shot, and me being immunocompromised and exposed to a crowded school environment. So for about four days, I had a high fever, no appetite, and went to bed around dinnertime. It was confirmed as the flu, because I had to return to University of Maryland and be evaluated. I stayed to receive IV fluids and all sorts of tests, only to realize that it was “just” the flu.

It was a wonder that I got any work done, and I already felt behind on the pages and pages of assigned reading. Immediately after my fever dissipated, Aunt Flo decided to make its appearance 10 days earlier than expected. She was so extremely heavy that I was fearful that something was wrong with me, especially when I had just had a surgical procedure done the week before for an irregular Pap smear. This all may be TMI, but I am just trying to illustrate clearly just how rough the first week or so ended up being.

Also immediately after days of high fever and minimal eating, I had to retake my school photo. My face looks quite pale.

This past week, I have been able to manage my workload a little better. In fact, I had my first presentation today, and from the professor’s initial feedback and honestly just having a very knowledgeable partner, we did well. My classmate undoubtedly outshined me with his foundational knowledge as a Taiwanese citizen on topics related to China and Taiwan, but despite some blush-inducing embarrassment, I am still proud of what we did together, particularly because we were the first to present this semester and seemed to have set a pretty good example.

So despite having the worst first week, I am gradually getting a hang of things and am feeling much better. I am grateful that Hsuan was by my side through it all to care for me.

Coming up this week, I have what hopefully will be a clean PET scan, before I can have a break on scans until next year.

First Day

The first day of what hopefully will be my last year of grad school has come and gone, and in some ways, it feels like I’ve never left.

After almost two years, I am able to continue my studies again, and although not without some health issues, I am back and feeling good.

With Hsuan not starting his classes until next week, he was able to drive me to and from my classes, even cooking lunch and dinner for me. #perfectman

Job prospects for this semester aren’t looking good, but after reviewing class syllabi, I’m not so sure it would be wise to go from months of rest to full-time student with a part-time job. My parents and Hsuan don’t advise so, either.

Lately I have also been considering whether I should continue blog updates. This next chapter—living away from home, finishing my studies—feels a lot more private in a sense, so perhaps these updates will come a little less often.

Moved In!

Gantri light.

Hsuan and I have officially moved in to our new home!!

Some family friends have offered to help us purchase some furnishings as housewarming gifts, and we are so grateful.

In other news, I returned to campus on Monday for a Honor Council board hearing, which was the most serious case I’ve encountered so far. I am a graduate member, which means I occasionally volunteer to judge student cases involving plagiarism, cheating, and other Honor Code violations at Georgetown. Especially with serious cases, it feels weird to have the power to determine whether a student should be suspended, dismissed, etc.

Classes begin next week, and my throat just started feeling sore today. I’ll have to ask my oncologist about precautions tomorrow when I see him, because school environments are breeding grounds for viruses and germs—not exactly good for the immunocompromised.

Anyway, I expect to hear back from some internships soon. There is an editorial opportunity that I am particularly excited about and felt good while interviewing for, so let’s cross our fingers!!

Home Essentials

As Hsuan and I work on furnishing our new home, I have done countless hours of research on various kitchenware, furniture, electronics, bedding, etc. This laborious process is a night-and-day change from those freshman dorm shopping days when Bed Bath and Beyond was pretty much the one-stop shop—along with CVS for those daily essentials. Even after college, moving into the partially furnished apartment in China, one IKEA trip was all it took.

And now just a few years later, I’m scouring the Internet for the “perfect” mattress, air purifier, vacuum, TV, pots and pans, and more for our needs and budget. Quite early in my search, I realized I would have to separate my wish list items into “realistic” and “wedding registry.” I discovered so many brands and products that I dream of owning but could never justify purchasing myself, including All-Clad cookware ($1,000+), a Naturepedic organic mattress ($3,000), a Medley sofa with natural latex ($4,000), a German-made Sebo vacuum ($500+), a Molekule air purifier ($800) or IQAir ($900), Brooklinen sheet bundle ($200+)—man, it adds up.

So while we are still looking for slightly more reasonably priced couches, TVs, rugs, etc., I figured it’s time to start sharing what we have already purchased. Hope this is useful! (Obligatory disclaimer: My choices may not fit you and your needs. Further research is recommended, especially on certain health claims.)

MATTRESS
Company: Flexus Comfort https://www.flexuscomfort.com/
Product: QUADRA-Flex® Pocket Coil Latex Mattress
Features: Queen; medium firmness; 100% Natural Talalay Latex
Price: $976.50 with summer promotion (originally $1,085)
Why I Chose It: Under $1,000; not too firm (Talalay latex is less firm than Dunlop); the latex is all natural and biodegradable, making it better for our health and the environment; comes directly from the manufacturer, cutting retail markup costs and avoiding suspiciously excessive social media marketing.
Research: Testing a latex mattress at a Naturepedic store; Reddit’s r/mattress; themattressunderground.com

Austin Air HealthMate Plus Junior® Air Purifier

AIR PURIFIER
Company: Austin Air https://austinair.com/
Product:
HealthMate Plus Junior® Air Purifier (A250 HM250)
Features:
Removes various gases, chemicals, VOC’s and formaldehyde
Price:
$418.50 via Clean Air Haven (originally $465)
Why I Chose It:
While Dyson’s three-in-one heater, fan, and air purifier looks cool and is a great idea, I wanted function over form and didn’t feel the heater and fan were necessary. Above all, I wanted a non-ionizer air purifier (ionizers may produce ozone gas) that removed chemicals and VOC’s, which are harmful gases that may be present in new furniture. “Junior” is cheaper and enough for our small bedroom; portable for moving into living room when needed.
Research:
Reddit; review sites; article rankings

VACUUM
Company: Miele https://www.mieleusa.com/
Product: Compact C1 Pure Suction Vacuum in White
Features: Canister vacuum; includes a combination rug and floor tool ideal for both hard floors and low to no pile carpet
Price: $339.19 with 20% Bed Bath and Beyond coupon (originally $399.99)
Why I Chose It: Compact and nice design; good for hardwood floors; designed by Miele, a German brand known for quality (the BBB version is made in China); most affordable of Miele vacuums; wanted to avoid Dyson.
Research: Reddit, Google

As for sheets, although I was close to purchasing the “Internet’s favorite sheets” from Brooklinen, I ended up finding some “organic” sheets from a brand even Google couldn’t find from a Burlington outlet. It claims to be STANDARD 100 by OEKO-TEX®, but I can’t find it anywhere online except for on Burlington’s website. I suppose in my rush to find something while out with my mom, I just didn’t care that much and maybe when these sheets wear out, I will consider reputable, actually certified organic brands.

“The Dutchess” by Great Jones

As for pots and pans…honestly all the trips to Marshall’s, TJ Maxx, Home Goods, etc. have been mostly fruitless, having bought a sub-par Calphalon stainless steel pan that likely won’t even work with our induction stovetops. I keep going back to Great Jones ($395 for the set), and I may just ended up getting at least one or two of their products.

If all this hasn’t already given you a headache, congrats. Let the search continue…