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.
On June 16, 2017, Malcolm dog and I walked in the UCLA Luskin School of Public Affairs graduation ceremony at Royce Hall. I finished my 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.
I can not tell you how happy I am right now. It would be ridiculous to try.
It’s #ColorectalCancerAwarenessMonth. Young people, Black people, and women people get colorectal 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.” Continue reading →
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.
Jo Ann was the only one who saw the full range of what cancer did to me.
“What he said was that you shouldn’t give up …” Jo Ann said, repeating what my oncologist had just told us after another exhausting failed attempt at extracting stem cells from the painfully unyielding catheter in my neck. Her measured words staked the pros and cons again. But then she came to an abrupt full stop. Seeing that my face had fallen, she ditched what she was saying right there on the sidewalk, fixed her big compassionate eyes on my face, and wrapped me in a hug that pulled me in to set down my worries for a minute without trying to smother the truth. Continue reading →
Was this really just one week ago? As the horror of the 45th president unfolds each day, the punishment of being forever banished to a high-risk health insurance pool due to my cancer history brews thicker on the horizon … along with many other personal fears.
I’ve been looking back on these photos of protest as a reminder that we can and we will resist. Let’s not forget that 750,000 of us in Los Angeles marched for women’s rights in an unprecedented day of protest ignited by the Women’s March on Washington. It spread like wildfire out into cities across the world. We can and we will resist everywhere.
Thanks so much to Jeff Chang for inking his timely new book, We Gon’ Be Alright: Notes on Race and Resegregation. If you want to stay woke, lock down some sanity, and know how social progress can still move forward, this is it. I read it this week, and highly recommend if you’re into credible insight and non-alternative facts. Super grateful that I got to hear Jeff speak on it (on my birthday) and grab his autograph on my copy … I wonder if this is the first time he’s signed a book out to a dog?