School For Remedial Living

For the most part I feel fine. I’m pretty relaxed these days. I’m not working as much. As someone who has worked and efforted hard my whole life, it’s a reprieve, but also, disorienting.

Today, I feel like Nemo’s dad in that scene where he’s swimming through the part of the ocean where there are no fish. No sign of life. It’s a bit murky. He hears creepy whale sounds from distant directions. That scene hits at some psychic level of terror. That feeling of finding yourself alone, directionless, in some part of the ocean where you know you don’t belong.

But I try to not be too dramatic. It’s only been 6 weeks. And, maybe it’ll all be fine. Maybe the chemo just knocks it all out. Maybe there are no operations or only very minor ones needed. Maybe I’m able to use the very recently approved ultrasound therapy vs. radiation that has proven wildly effective with virtually no side effects. Maybe we find it’s all way too aggressive and too far gone, and I die.

This year will be 13 years since my mom died. She died suddenly in her sleep. It was a Tuesday, early morning, before my dad woke up. To say that it about broke me is an understatement. I was 12 weeks pregnant with Wren. I remember that for a while, I had this really altered sense of things. One thing I thought a lot about was how odd it was to hear people say someone “beat” cancer. Or “survived” a heart attack. As if that would save them in the end. Spoiler alert, no one gets out of here alive.

I started to lose an important grip on reality. One that kept me tethered here. 6 mo after Wren was born, and 6 mo into postpartum depression that got worse with each kid, I found myself suicidal and admitted to the psych ward. The admission room was pretty stark. There was one small window high on the wall with bars over it. There was a bed in the room with straps. I was just sitting in a chair, handing over anything I had brought. The admission nurse, about my age, handed me these drab brown hospital issued jammies. She said to me, “I have three kids. I get it. You’re going to be ok. Think of this like the Marriott. But without the pool.” It was certainly not the phych ward experience you see in the movies. It was actually more like the Marriott, without the pool. Even the craziest of people there, the ones you see wandering the streets, muttering to themselves, when treated with the proper medicine and a shower, showed up to breakfast holding whole conversations, asking if you’ll trade your orange for their egg.

I was released on the condition that I’d attend an outpatient program at Herrick Hospital in Berkeley. It was 9am - 4pm every weekday for a month. In the morning, we’d check in and go around the table and say how we were feeling. If you weren’t sure, they’d hand you a laminated sheet with cartoon faces showing various emotions and you could just point. But you couldn’t say “fine.” FINE, they said, stood for: Fucked Up, Insecure, Neurotic, and Emotional. Not responding with “fine” is hard. It means you have to pick a real emotion. Like when I ask Billy how I look, with a “but you can’t say 7.” It’s taken 23 years, but he’s learned that it’s a trap.

Some mornings people would show up with their bills. And we’d just sit with them while they did them. Sometimes someone else would fill out the check for them and put the stamp on the envelope. The staff would take the bills to the front desk who would take care of mailing them.

I came to refer to the program as the School for Remedial Living. Some grief, hardship or heartbreak had landed each of us there. Across the board we were people who had been fairly successful at living. We held down jobs as writers, artists, lawyers. All different ages. People who had been relatively fine. People who just found themselves in places where they needed more help than they were able to ask for or didn’t have access to. But there, life slowed down just enough for them to find their footing again. There were people around them, skilled at seeing the signs. And people who sat next to each other to help at times with the simplest things that in the end, can just take us down.

Turns out that same hospital has a Comprehensive Cancer Center. And yep, it’s where I now go for appointments with my Oncologist, the blood draws, and chemo infusions. Twelve years ago I went through the door to the left to get help because I wanted out. Every other week, I go through the door on the right to get help because I want in.

At the end of each of my infusions at the hospital, they send me home with a little pump that continues to deliver medicine for, specifically, 46 hours. It’s delivered through an IV that gets inserted into a little “port” that was put in under my skin a few inches below my collar bone. It beats getting an IV inserted into the back of my hand every time. The portable pump machine is about the size of an old walkman, but 3x as heavy. In lieu of the issued black, medical looking bag it goes in, I got a cute Lululemon cross bag that fits it perfectly and has room for my phone and keys.

I’ll go through the door on the right today, when I go in to have the IV and portable pump removed. While I’m there, the social worker on my team will sit next to me while I go online and fill out disability documents, change my insurance status and complete paperwork. Ironically, that’s the stuff in all of this that is just about enough to put me over the edge. And it helps to have someone just sit next to me while I do it.

Mostly, I’m fine. But that’s not quite accurate. On any given day, at any given moment I’m not quite sure how I feel. Maybe I can ask today for a copy of the laminated sheet and when people ask me how I am, I can just point

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