Jason Collins: “A few months ago, my family released a short statement saying I had a brain tumor. It was simple, but intentionally vague. They did that to protect my privacy… it’s time for people to hear directly from me. I have Stage 4 glioblastoma, one of the deadliest forms of brain cancer”
https://www.espn.com/nba/story/_/id/47266076/jason-collins-stage-4-glioblastoma
A few months ago, my family released a short statement saying I had a brain tumor. It was simple, but intentionally vague. They did that to protect my privacy while I was mentally unable to speak for myself and my loved ones were trying to understand what we were dealing with.
But now it’s time for people to hear directly from me.
I have Stage 4 glioblastoma, one of the deadliest forms of brain cancer. It came on incredibly fast.
In May I married the love of my life, Brunson Green, at a ceremony in Austin, Texas, that couldn’t have been more perfect. In August, we were supposed to go to the US Open, just as every year, but when the car came to take us to the airport, I was nowhere near ready. And for the first time in decades, we missed the flight because I couldn’t stay focused to pack.
I had been having weird symptoms like this for a week or two, but unless something is really wrong, I’m going to push through. I’m an athlete.
Something was really wrong, though. I was in the CT machine at UCLA for all of five minutes before the tech pulled me out and said they were going to have me see a specialist. I’ve had enough CTs in my life to know they last longer than five minutes and whatever the tech had seen on the first images had to be bad.
According to my family, in hours, my mental clarity, short-term memory and comprehension disappeared – turning into an NBA player’s version of “Dory” from “Finding Nemo.” Over the next few weeks we would find out just how bad it was.
What makes glioblastoma so dangerous is that it grows within a very finite, contained space – the skull – and it’s very aggressive and can expand. What makes it so difficult to treat in my case is that it’s surrounded by the brain and is encroaching upon the frontal lobe – which is what makes you, “you.”
My glioblastoma is “multiforme.” Imagine a monster with tentacles spreading across the underside of my brain the width of a baseball.
My glio is extraordinary for all the wrong reasons, and is “wild type”– it has all these mutations that make it even more deadly and difficult to treat. What’s that mythical creature where you cut off one head, but it learns to grow two more? The Hydra. That’s the kind of glio I have.
People ask me what it was like hearing all this bad news. Well, the good thing is I was totally out of it when they were explaining all this to my husband and family in the hospital, and I don’t really remember. Brunson said I lost the desire to watch tennis while I was in the hospital, unable to move, and took a liking to calm, quiet Korean soap operas – in Korean.
One thing I’ve always prided myself on is having the right people in my life. When I came out publicly as the first active gay basketball player in 2013, I told a lot of the people closest to me before I did so. I wasn’t worried it would leak before the story came out, because I trusted the people I told. And guess what? Nothing leaked. I got to tell my own story, the way I wanted to. And now I can honestly say, the past 12 years since have been the best of my life. Your life is so much better when you just show up as your true self, unafraid to be your true self, in public or private. This is me. This is what I’m dealing with.
As an athlete you learn not to panic in moments like this. These are the cards I’ve been dealt. To me it’s like, ‘Shut up and go play against Shaq.’ You want the challenge? This is the challenge. And there is no bigger challenge in basketball than going up against prime Shaquille O’Neal, and I’ve done that.
I know how to do that. When I was making my decision to come out publicly, I remembered a scene in the movie “Moneyball” where Red Sox owner John Henry (Arliss Howard) says to Billy Beane (Brad Pitt) that the first person through the wall always gets bloodied.
I feel like I’m right back in that position now, where I might be the first person through this wall. We aren’t going to sit back and let this cancer kill me without giving it a hell of a fight.
We’re going to try to hit it first, in ways it’s never been hit: with radiation and chemotherapy and immunotherapy that’s still being studied but offers the most promising frontier of cancer treatment for this type of cancer.
Due to my tumor’s genetic makeup, the standard temozolomide (TMZ) chemotherapy for glioblastoma doesn’t work on it. Currently I’m receiving treatment at a clinic in Singapore that offers targeted chemotherapy – using EDVs – a delivery mechanism that acts as a Trojan horse, seeking out proteins only found in glioblastomas to deliver its toxic payload past the blood-brain barrier and straight into my tumors.
The goal is to keep fighting the progress of the tumors long enough for a personalized immunotherapy to be made for me, and to keep me healthy enough to receive that immunotherapy once it’s ready.
Because my tumor is unresectable, going solely with the “standard of care” – radiation and TMZ – the average prognosis is only 11 to 14 months. If that’s all the time I have left, I’d rather spend it trying a course of treatment that might one day be a new standard of care for everyone.
I’m fortunate to be in a financial position to go wherever in the world I need to go to get treatment. So if what I’m doing doesn’t save me, I feel good thinking that it might help someone else who gets a diagnosis like this one day.
After I came out, someone I really respect told me that my choice to live openly could help someone who I might never meet. I’ve held onto that for years. And if I can do that again now, then that matters.