"This time, baby, I'll be bulletproof." -La Roux

When they told us about my recurrence, and how bad it was, I asked the nurse if she had some sort of manual for how to do all of this. How to tell our parents. How to tell our friends. How to live life like everything is normal after everything has fallen apart. How to get through the day when it feels like your heart is breaking. 

Spoiler alert: there is no manual. 

So instead, I find myself seeking out any firsthand knowledge from cancer patients that I can. Searching for “recurrence” and “advanced cancer” and “immunotherapy” on all of the Facebook cancer groups I’m in. Reading When Breath Becomes Air, written by a young doctor who was diagnosed with cancer at the height of his career, and It’s Always Something by Gilda Radnor. Following organizations like Brave Like Gabe, which was founded by a runner named Gabe Grunewald to raise awareness of rare cancers like the one she was diagnosed with. 

I’m gathering intel, I think. Trying to figure out how others did this, how I can find some semblance of meaning in what’s happened to me. How to make it through this while maintaining some dignity, grace, and humor. (Which, guys...this is a very undignified form of cancer...I mean, maybe there isn’t a dignified form of cancer, but this one is A REAL DICK.) 

I think a lot about Chadwick Boseman and Ruth Bader Ginsburg. I know that might seem like a weird combination, but it’s because Chadwick Boseman died of cancer last August, not long after I was diagnosed, and Ruth Bader Ginsburg died soon after, while I was recovering from surgery. 

I think a lot about them because of the dignified ways they went through this shit journey. Chadwick Boseman somehow kept his cancer out of the public eye until he died, all while continuing to do what he loved--make movies. I honestly can’t fathom the strength it must have taken to keep up that grueling schedule, all while undergoing treatment AND keeping everything a secret. I would think about it a lot when I’d come home from radiation or chemo and basically be a zombie for the rest of the day. If someone had asked me to put on a spandex outfit and pretend to have superpowers I would have punched them in the face. And if I DID somehow manage to do something like that? Obviously, I would have told everybody so they could tell me how many stickers I’d earned. 

While people knew about Ruth Bader Ginsburg’s cancer, it mostly seemed like she just told cancer to take a backseat to her job. She went through treatment while still working an incredibly stressful job at approximately 118 years of age. Like, we knew she was a badass, but bossing cancer around? That is next level. 

I didn’t always think favorably about these kinds of stories. On the way to radiation one day, I was ranting to Lauren about toxic positivity and I got onto the subject of people just LOVING stories about cancer patients who persevere against all odds. I was NOT HAPPY about the existence of this inspiration porn because honestly? Just getting through the day when you have cancer should be enough. Like, you have cancer AND you showered? Holy shit, gold star. You ate something? Even better! You carried on a normal human conversation? YOU ARE A HERO, HERE IS YOUR MEDAL. 

This time feels different, though. I still don’t LOVE the idea of those stories but I am drawing strength from the idea that I can maintain some sense of normalcy during this time, even if that normalcy is not running marathons or making superhero movies or sitting on the Supreme Court but reading books and writing all my thoughts down and going outside to look for animals. Maybe it’s because I know that, this time, the cancer isn’t going away. This isn’t going to be the blip in my life I was hoping it would be. I need to learn how to live my life around it. In spite of it. Tell it to get out of the way when I need it to. Channel RBG, just a little, every day. 

At that horrible appointment last month, when I asked for that non-existent manual, the nurse just kind of stared at me. (I don’t think they always get my humor, or know when I’m kidding.) But I don’t think I WAS totally kidding about needing a manual. It would actually be really helpful to know if what I’m feeling and how I’m acting is normal (whatever normal is). To know how others do this or have done this. To know what comes next. I think this is why I’m so desperately trying to absorb all the information I can from other cancer patients. I’m trying to become the example I need to see. To write the manual myself, as I go.