Book release soon! Jade Gangster: Chronically Illin’ with Cancer 

Book release soon! Jade Gangster: Chronically Illin’ with Cancer 

Christabel Cheung’s first book is an illness memoir that inks her custom tag on life after two diagnoses of cancer as a young adult. Here is a preview.

 

INTRODUCTION

In September 2008, at the age of 32, I was diagnosed with a type of blood cancer called Hodgkin’s Lymphoma. I was sick for over a year before I got this news, but thought my symptoms were just a combination of a nagging flu bug, nonprofit job stress, and over-training for marathons. I was very in touch with my body and in peak athletic condition – being a certified personal trainer for many years, having run 14 marathons up to that point, and even coaching for the National AIDS Marathon for several seasons. Nothing prepared me for cancer.

Folks kept saying, “Don’t worry.” And that Hodgkin’s Lymphoma is the “good cancer,” because it boasts a near 93% cure rate with first line treatment, which was six months of ABVD chemotherapy. Even though I trolled pretty hard physically, isolated myself, and went to some very dark places emotionally, I somehow got through it.

After finishing those six months of ABVD chemotherapy, I was told that I was in remission. I celebrated my remission with a personally forced trip to Hawaii, where I was too sick to do much of anything. But I did toast my remission with a glass of wine, and I got to meet my aviation hero Sully Sullenberger on my flight. Well, despite my circus of get-lost-cancer antics, a PET scan only a couple months later showed something small.

“It’s probably nothing,” is what I was told. I spent 19 months in limbo, haunted by “probably nothing.” I kept telling myself, “I’m in remission,” over and over again, as I moved through a series of failed biopsy procedures and surgeries that left me with more pain and nerve damage. And at the end of those 19 months–days shy of my 34th birthday in 2011–I was told they had been wrong. No remission for me. Happy birthday … now, die!

Moded and corroded. I became part of the 7% that fail first line treatment for Hodgkin’s. I guess someone needs to be in that unlucky margin.

Since I was only in remission for a couple months at best, I was labeled with primary refractory Hodgkin’s Lymphoma and a high-risk for failure. Docs plotted on an extremely aggressive approach to second line treatment–higher than customary, doubled-up doses of high-dose chemotherapy; autologous bone marrow transplant (a.k.a. stem cell transplant); radiation therapy; and a clinical trial with a new drug for relapsed Hodgkin’s (SGN-35).

When my cancer recurred, I opened myself up to receiving more help and support from friends, and did my best to cut out unhealthy relationships. I also started to blog about it all–first, to a closed network, and later, widely. This second part of aggressive treatment in my cancer journey made first line treatment look like a walk in the park. I went through every single step in the bone marrow transplant process until the final infusion, at which point, my lungs were deemed not healthy enough to continue. I lost 60% of my lungs.

There have been many twists and turns from my initial treatment plan due to the consequences of past treatment on my body, changes in medical opinions, unforeseen obstacles like the national shortage on chemotherapy drugs, guidance from my spiritual path, and shifts in what I’ve wanted for myself over these years. Every aspect of my life has been challenged by cancer–my professional career, finances, health insurance, fertility, family, friendships, dating, and it goes on.

Jade Gangster is my alter ego … because sometimes, I need to Jade Up. Hailing from Hong Kong, London, Detroit, and many places in between before settling in California and Hawai’i, Jade Gangster is a mash of .5 generation immigrant Chinese, Buddhist heritage, yoga practice, borrowed Native American tradition, middle-class, maybe a little boughetto, and other urban American influences that all bang on cancer. Jade symbolizes the human disease process, because this lustrous metamorphic gem is created by heat and pressure that produces profound physical and chemical change. Gangster is a metaphor for the young adult cancer tag, because cancer picked me–like it or not–and the only way out of this gang is when I die.

Cancer isn’t funny, but it does have a sense of humor. I write about it, because it gives me courage.

 

[photo cred Robert Houser]

 

 

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My first sole-authored article in a scientific journal

My first sole-authored article in a scientific journal

Hyped and humbled about publishing my first sole-authored article in a peer-reviewed scientific journal. I am immensely grateful to my mentors and colleagues for their feedback and encouragement that made this contribution possible. I hope that my scholarship will one day improve the life a young person facing the devastation of a cancer diagnosis. Definitely worth surviving cancer twice to do.

Full article HERE.

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CNN got my embodied research covered

CNN got my embodied research covered

Honored and humbled to contribute both my embodied research and personal experiences with cancer technologies in this CNN story by Susan Scutti. Congrats to Teen Cancer America on their 2017 Global AYA Cancer Congress success. I’m looking forward to 2018, when our global squad will meet in Sydney, Australia, to keep working on better outcomes for adolescent and young adult cancer patients.

Teen, Young Adult Cancer Patients Fall Through the Cracks: Can Technology Help?

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It’s DOCTA Jade Gangsta, if ya nasty

It’s DOCTA Jade Gangsta, if ya nasty

On June 16, 2017, Malcolm dog and I walked in the UCLA Luskin School of Public Affairs graduation ceremony at Royce Hall to mark my completion of a PhD in Social Welfare. My dissertation was entitled, Occupied with Cancer: Trajectories of Employment/Education and Psychological Distress among Socioculturally Diverse Adolescent and Young Adult Cancer Patients.

When I began doctoral studies at UCLA, I did not think that I would finish. My last cancer prognosis gave me an 80% chance of 2-3 years before the lymphoma would return. It wasn’t a secret. All my people back in the SF Bay Area knew. But when I relocated to Los Angeles, I kept this prognosis from my colleagues until more recently. They didn’t need to know. Back then, I was content with the idea that being a doctoral student would be my final gig. So, lucky me. Even though the most important degree in my professional career will forever be my humbling GED, living long enough and healthy enough to earn a PhD is pretty dope too.

I got so many mahalos and so much aloha for my impressive squad of mentors, friends, relatives, and clinicians (y’all know who you are). Cos let’s be honest, there’ve been folks who tried to get in my way across these years. But my good people have been such an important part of supporting me through the vicissitudes of life before, during, and after cancer hit 2x. I could not have done this without their love, compassion, big laughs, practical help, and tolerance.

In August, I will begin my new role as a tenure-track assistant professor at the University of Hawai’i – Myron B. Thompson School of Social Work.

I can not tell you how happy I am right now. It would be ridiculous to try.

 

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Black cancer girl magic

Black cancer girl magic

It’s #ColorectalCancerAwarenessMonth. Young people, Black people, and young Black women people get cancer too! I’m honored to ink this laugh-cry-laugh-cry story of Chellese Parker and Iman Perry to tell you how it is…

The fact that their table was the only one with a grip of cancerous people of color (POC) at CancerCON, made me ask to join them – for all the same reasons why all the Black kids in the cafeteria sit together in elementary school.

After seeing that the situation was so white at the largest national conference for young adults with cancer, Chellese Parker and Iman Perry took to social media with the conference hashtag and started liking pics posted by POCs at the conference, who subsequently liked them back, and later linked up with them at the meet and greet.

“We did that on purpose,” said Chellese. “Being Black girls is a big part of who we are. Pride in our culture, relishing that, and Black girl magic is abundant in our circle of friends.”

Admittedly, most of us had no idea that the world of young adult cancer advocacy (a.k.a. AYA cancer) would be so white until we arrived. “I know that Black people get cancer, and that cancer doesn’t discriminate. So, I didn’t think that POCs would be so scarce,” said Chellese. “People of color need each other in a way that I don’t know if white people need? And maybe they don’t need each other, because they already have each other. So, it’s not on their radar.”

We bounced around our names, diagnoses, stories about being young racial minority cancer patients, and how we got ourselves there – to CancerCON – where most patients of color were not. We held it down.

“I have a problem with the word survivor,” Iman said, when we started talking about all the cancer survivor, thriver, fighter, etc. labels that put a militant or way positive spin on being a cancer patient. Iman explained that she wasn’t a survivor, that she’s still struggling, and that it’s not because she’s doing anything wrong. Also, patients who get to claim remission aren’t doing anything right either. Ain’t that the truth.

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My cancer framily – Jo Ann Madigan

My cancer framily – Jo Ann Madigan

Happy birthday, Jo Ann! You mean way more to me than any peek into our story can say, but here ya go anyway…

Stepping out from the bone marrow transplant clinic at UCSF into the jam of bodies crisscrossing Parnassus Avenue, there was only one thing on my mind – everything.

Should I just get back to work and let the cancer run its course? How long could I live in this body and off my savings? Should I move now and lower my rent? Where?? … I wanna quit treatment so bad.

“Where did you go?” Jo Ann asked. “What are you doing up there?” she jokingly sang at me as she twirled her finger up for effect.

Jo Ann knew where I went … inward and down. She was the only person that I let see me like that.

I was deep in treatment for my second cancer diagnosis and had fallen into the necessary habit of masking my fears behind an endless shuffle of younger cancer patient caricatures – the assertive but still-laughing patient, the struggling but ever productive co-worker, the wise youngin in a crowd of elderly patients, or the sensible dying friend who makes you feel guilty about your petty nonsense – people basically saw me however they needed.

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Survivorship in communities of color–You are not alone! #AintIaSurvivor

Survivorship in communities of color–You are not alone! #AintIaSurvivor

Black, brown, yellow, mixed-race, shame, stigma, religion, family or none, bone marrow challenges due to race, why we (people of color) don’t participate in existing programs, and how we won’t go down like death by a million papercuts! Oh, we went there and back and we’re ready to do it again!

Yesterday, at #CancerCON in Denver, Colorado, we convened the first-ever break-out session focused on young people of color living with cancer entitled, “Survivorship in Communities of Color – You Are Not Alone!” As panelists, we didn’t have very high expectations for turnout, since we were a 9:00AM session on Sunday, the last day of the conference. But our panel of five patient-turned-advocates-of-color drew 24 attendees who circled up with us to talk story and keep it real. Voices were lifted, tears were shed, and cancer survivors were validated and empowered.

Big thanks to Eric Galvez, DPT (brain cancer gangster), who conceived of this idea and prodded the rest of us to work together. In addition to Dr. Galvez, our panel included Tamika Felder (cervical cancer gangster), Jay Carter (leukemia gangster), Steven Lee (leukemia gangster) and me, Christabel Cheung, MSW (Hodgkin’s lymphomie gangster).

Thanks to CancerCON for giving us this important opportunity to make a difference!

If you’ve got something to say about being a minority cancer patient, please share and tweet it out #AintIaSurvivor.
Please message me if you have any ideas about other high-visibility gatherings where this discussion is needed.

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Minority within Minority – #AintIaSurvivor

Minority within Minority – #AintIaSurvivor

 

After an exhausting eight hours of pulmonary (lung) function testing, the head pulmonologist at one of the country’s top pulmonary function labs in California, handed me the written results of my performance, and explained the series of tables and graphs.

“You lost 40% of your lung tissue, and according to these tests, the 60% of tissue that you do have is working at 50% for an average woman your age,” said the esteemed pulmonologist. “But it’s probably not that bad,” he continued. “Asians usually have smaller lungs anyway. Our data is adjusted for African American and Hispanic, but not Asian … so, not sure how much smaller, but like I said, probably not as bad as it looks.”

I had waited months to get into this renowned pulmonary function lab in hopes of solving for my post-treatment chronic fatigue and shortness of breath, not to mention, suffering through an exhausting day of – lock yourself in this oxygen chamber then that, breathe, breathe, breathe, hold, hold, hold, blow, blow, blow, pinch your nose then don’t, push on your cheeks, then puff them out, cycle on your butt, cycle on your back, blood pressure now, blood pressure later, let’s listen to your lungs, wait, wait, wait, now walk, now stop, now ohmygahhh I really can’t breathe anymore! – just to generate this so-called-scientific report of how I have crap for lungs that are maybe not so crappy when you think about it.

Well, at least they adjusted for age, which doesn’t usually happen for young adults treated in oncology settings that typically have a geriatric bent on everything. But even when focusing on the margins, my needs were left out. Young, Asian, and cancerous, I was a racial minority within a minority population of young adult cancer patients – a disregarded minority within a minority.

Often, in efforts to be culturally responsive, clinical practice addresses the needs of the burgeoning Asian American patient population by making things available in various Asian languages – language access is considered tantamount to health equity. Although language is indeed hugely important for those with limited English proficiency, it is not the panacea for the complete set of challenges facing Asian Americans who seek health care.

“They don’t know,” translated into whatever language still means, “They don’t know.”

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Believe that – Researching AYA cancer with  Dr. Brad Zebrack

Believe that – Researching AYA cancer with Dr. Brad Zebrack

When I first thought about pursuing a PhD on surviving young adult cancer, I checked out what had already been done, Googling “young adult cancer survivorship,” “young adult cancer psychosocial,” and “aya cancer social work.” (AYA stands for adolescent and young adult.) The first search term produced 4 out of the first 10 articles authored by BJ Zebrack, the second resulted in 5 out of 10 by him, and the third gave me a remarkable 9 out of 10 articles by BJ Zebrack.

So, I read everything that “BJ Zebrack” published, even skimming through his 1999 dissertation, “Living beyond the sword of Damocles: the quality of life of long-term survivors of leukemia and lymphoma.” His work was much of what I had been wanting to know about young adult cancer and living for a while afterwards–one exception, he also wrote on pediatric cancer. Don’t freak. I don’t hate on kids. I just don’t want to research them.

Who is BJ Zebrack??

Googling some more, I found out that he was on Twitter, had a LinkedIn account (annoying invention), and was now a professor at the University of Michigan.  But the thing that really caught my eye was an interview he gave to the American Society of Clinical Oncology. The article opened his biosketch with, “Diagnosed with Hodgkin’s lymphoma at 26, Brad Zebrack, PhD, MSW, MPH …”

WHAAA?!!!!!! A cancer gangster?? I need to talk to this guy.

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Facing Chemo Project

Facing Chemo Project

Robert Houser is the mega talent who shot pics of my baldness in the Spring of 2011, while I was deep in the middle of the bone marrow transplant process. In the process, Bob won the award for Creativity in Photography from Communication Arts Magazine, the largest trade journal of visual communications, for this image (to the right) that he took of me. The photo was then featured in the 2011 Communication Arts Photo Annual, and Bob has since photographed many other cancer patients, growing this impressive Facing Chemo project that will be showcased in upcoming gallery showings and a book to follow.

To accompany Bob’s images, I inked this foreword for his book… 

When I was first diagnosed with Hodgkin’s Lymphoma at 32-years-old, I was unsure about photographing my cancer baldness. I wasn’t keen on the idea of creating a pictorial flipbook of my train wreck. But in the process of my illness, photos became one of my most cherished material possessions. So, when I found out that the cancer had recurred, I wanted to be photographed. The solitude of this life-threatening disease made me want to capture whatever time I had left, however I looked. 

These images by Bob Houser were taken during one of the most fragile parts of my struggle with relapsed cancer – an intensely personal and transformative time, when I had to dig deep within my soul to find enough resolve to live beyond the end of each painful exhalation. For me, my will to live grew by cultivating self love – physically, emotionally, intellectually, spiritually… and in any way that I could.  Continue reading →

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