The Beginning of the Next Story
The cancer is back again. On June 2, almost exactly six years after my first diagnosis, I found out it’s back in my liver, my worst fear. I was alone in the apartment when the pathology report was emailed to me. I saw the word cholangiocarcinoma. I held onto the kitchen counter. That’s all I remember.
Usually I don’t tell you about the hard things until I’ve arrived at some degree of optimistic assurance about my situation. For one, the social media algorithm isn’t kind to bad news, but more so, the vulnerability of uncertainty is too much for me, and so I assume it will be for you as well. I don’t want to worry you. I want to be able to tell you about hell from the standpoint of hell being over. That is not the case today. The truth is I’m grieving and breathing and planning and fighting. And I’m trusting you’ll be able to handle that.
That’s not to say there isn’t a great deal of hope, I just don’t have the details pinned down yet. The consensus is that I needed a liver transplant, the only potentially curative treatment. But Pennsylvania Hospital’s transplant team said they would not do the surgery because of the complexity of my case…because the risks were too great… and that I would have to find another transplant center.
People have asked me: who is your medical facilitator? Who is your “captain”? I stare at them confused. I’ve become CEO of my own liver and it’s a full time job. Everyday I sit at my desk from 8am till 7pm, contacting the most experienced, most aggressive and progressive transplant centers in the US, trying to convince their surgeons to save my life. I fill out forms, make spreadsheets, take notes on my dry erase board, check on the status of stupid insurance determinations. My phone rings every 10 minutes and I repeat my medical history over and over again. I parrot words I wish I never knew: bile duct, cholangiocarcinoma, hepatecomy, variceal banding, bilirubin, strictures, biliary drain. By the end of the day I have no voice and my head feels like it’s fallen into a bush fire. I’m mentally burnt.
I knew I needed a transplant anyway, regardless of the cancer. Rapid deterioration is a possible feature of chronic liver disease and can precipitate at any moment. But you’re never ready for it. Somewhere between December 26th, 2021 and April of 2022, as I got knocked down by one medical crisis after another, it began to look like my liver was on a landslide toward cirrhosis. (That’s actually not a bad title for my next one-man show. Landslide toward Cirrhosis.)
A strange consciousness takes over when you’re confronted with any relentless illness. You can’t quite believe it. You think back to your long stretch of asymptomatic health, “remission” as they call it, those years between age 22 and 36 when you forgot you even had this disease. Then you stop, pull yourself back to the present, and as if you’re about to get on a scary amusement park ride, say to yourself: Okay! I guess we’re careening down this hill… But you’re also doing everything in your power to break the fall.
I think that anytime you’re “going down,” it happens on two levels: the physical and the metaphysical. As you face the reality of being in a broken physical body, you are forced to face the fact that one day you will be non-physical. And you wonder how much time you have left. I’ve been a spiritual seeker since the age of ten. I don’t spend much time thinking about labels but if forced to identify, I’d say I’m agnostic: part-Buddhist, part-Contemplative Christian Mystic, part-Hermetic, part-Jungian Humanist. But the last few months have pushed me head first into a whole new depth of a dark night, the kind where you can’t see your hand in front of your face, cannot control what’s happening to you, and goddammit I’ve started praying my ass off. I’ve been in several foxholes in my lifetime and I’ve prayed, but not like this. I’m now talking to fucking angels. I mean seriously, who am I? It’s embarrassing. And yet, I don’t have to admit this. I tell you about the angels to prove that I’m on my knees, desperate to find an ounce of quietude in a massive noise-storm.
“Just the fact that you haven’t jumped out a window is amazing,” my dad said to me a couple weeks ago. “Because I might have by now. I wouldn’t blame you if you were like ‘fuck this.’” And it made me feel better because it felt like permission to react naturally to a shitty situation.
I do not wallow in self-pity all day and I am certainly not resigned to the diagnosis. I’ve always taken my work seriously, but until you’ve accepted the job of saving your life, you have no idea what the meaning of ‘serious’ is. So I’m far from languishing, but let me assure you that I believe this is unfair. I’m in the “this is some bullshit” stage of grief and won’t apologize for it. I will not be shamed by the self-help industry’s toxic positivity movement. Policing my thoughts is exhausting. My plan is to try and welcome all feelings no matter their temperature, and surrender the wheel to the best surgeons I can find. As soon as that’s locked down, I’ll let you know. This is just the beginning of the next story.
