Why Self-Advocacy is Important

Late stage cancer: when the internet won’t tell you what you want to hear.

But perhaps what you want to hear isn’t what you need to hear…

During the first five months of being diagnosed, I was terrified of overloading myself with information. I knew a rare, aggressive, stage IV cancer wouldn’t elicit overwhelming optimism from the internet, so I did what most 20-somethings would: I put on blinders, crossing my fingers that I’d wake up at the end of treatment and remarkably be cancer-free for the next 65+ years.

If ever I’d put my money on an outlier, I’d bet on myself. Division I volleyball at 5’3″, a year’s worth of solo-travel while finishing my Bachelor’s, and snagging a job at Google after being laid off amidst a pandemic? Sure thing – try me! Beating cancer oughta be a breeze. However, when historical statistics are so blatantly against your favor, it’s negligent to stay blissfully uninformed.

Then I met Bryce Olson. Bryce is a 7-year, stage IV prostate cancer survivor, advocate and certified genius. He’s also the most incredibly savvy, warm and intelligent human. As a fellow late-stage patient, he’s huge on breaking barriers, challenging the status quo and leveraging the power of technology to push for radically novel treatments.

Rare, metastatic cancers are a beast. There aren’t many innovative treatment options, particularly due to the tragically small amount of funding and attention rare cancers receive. As for mine, it’s a double whammy, being rare and metastatic. But cancer research is on the precipice of something incredible. Researchers, scientists and immunologists are pursuing individualized approaches resulting in cures to diseases like mine. I mean, cures! How amazing is that?

The bottom line is this: the system won’t save someone like me or Bryce. So we have to save ourselves. We have to slip into this role of self-advocacy, we have to push boundaries and we have to fight to be part of promising treatments that wouldn’t otherwise include us, oftentimes as the first of our kind (for example, I’m enrolled in a clinical trial as the first sarcoma patient receiving a specific type of targeted vaccine).

It’s not right, but as of now, it’s the way it is. It’s the way life is. For big change, we must pursue big ideas and take big risks. We must get scrappy, creative and entrepreneurial. And above all else, we must use technology as a conduit of good.

So we’re pushing the envelope. With Bryce’s generous guidance, we’re hosting a “Cure Kasey” virtual Hackathon, wherein immunologists, researchers, scientists, oncologists and experts in all-things-related to my cancer (stage IV fusion+ alveolar rhabdomyosarcoma) will put their brains together to come up with something novel. The brilliant minds in medicine are laser-focused, yet often siloed in their own expertise; we’re curious to see if there’s a potential solution that transcends diagnoses. Perhaps it’s a mutation or genetic marker to pursue, or a combinatorial treatment. But whatever it is, we know for certain that other patients with my diagnosis will benefit from the findings of this Hackathon for years to come.

Whatever it is, I have no option but to entrust in medicine, science, dot-connecting and the power of technology. When your life depends on it, you have no choice but to lean in. It’s not strength; it’s adaptation.

I’m hopeful, my heart is full and I’m ready to blaze the trail for other patients like me.

Let’s find this cure.

Hear more stories about young cancer advocates here.