Screw You, Sea Squirts.Posted on Thu, May 19, 2016

Ben and Izzy

It’s been a rough couple of months. We re-scanned my spine after two treatments of the Sea Squirt Solution to discover those little slackers did absolutely nothing. Worse than nothing, really, because my tumors continued to grow. Turns out, they only work in about 70% of Myxoid Liposarcoma cases, and I’m in the other 30. If you see a Sea Squirt, smack it for me.

So now we’re in a pretty serious situation. I’ve already taken a leave of absence at work to be able to focus on fighting this thing full-time.

Because of the wide-spread nature of the tumors, I have resumed chemotherapy with the big gun, Ifosomide. This is the really nasty one which knocked me on my butt a few years ago, but at least this time we have some idea of what to expect.

In addition, due to the positioning of some of these things along my spine, I am currently undergoing multiple courses of radiation to target them specifically. We’ve already blasted my lower back and carefully targeted one that popped up at the base of my skull. This week we’ll be focusing on other areas and will be resuming chemo next week.

The cancer has become very agressive and we’re getting agressive right back, but at the rate it is currently going, things aren’t looking good. But we do know that despite optimism and fighting the fight, there is also a very harsh possible reality we do have to accept. And so we’re starting to get things in order.

Right now, I don’t have many answers. But I want you to know that I love you all individually. Thank you for sharing my journey for these last 5 years, and for all of your love. It has always meant so much to me and continues to keep me going. I will be sharing more about everything that’s been happening soon. Some of it will be through these Zipperlist updates, and some I will just be posting on the site about some of the things I’m going through.

In the meanwhile, Kristin and I are finishing up a short film we made called “Stupid Things People Say When You Have Cancer.” because that’s just kind of what we do. It’s turning out to be pretty funny and very heartfelt. I promise to share it soon!

Go hug someone you love,

– Ben

(PS: I am available for hugs. 🙂 )

Categorized as Zipperlist Updates

About the Author

An actor trained in physical theater, living in New York City, livin' the dream. I am married to an amazing woman without whom I'd probably be dead by now, and step-dad to the irrepressible Izzy! I sculpt masks, I juggle, I act, I design graphically-type-stuff, and when offered the choice between two evils, I take the one I've never tried before. I listen, I fly planes, I bike to the beach, I am a tea brewing ninja, I design new board games with my daughter, and I tell stories... too many stories. And while I used to be trying to learn to juggle my work, living in this city, my dreams, my wife, but now I am reminded every day they are all one, all my life, and every day is one more day I get to live it.
All Content © Zipperleg Chronicles 2013 - Except for most of the photos, those are taken from the Internet. Sorry.
I am not a doctor, so none of my ramblings should be taken as medical fact.
Your milage may vary.