Hope

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Today I want to be anonymous. To be completely unknown. I don’t want anyone to know any one thing about me. Not my background. Not my baggage. Not my stats. Or my reality. I’d like to be anonymous to me even, because I’d like to erase all the things that describe me but don’t. I’d like them not to exist. And I can’t escape them, like a shadow. And today I’d like to not be known by all those things. Today I’d like to step outside myself, shed my skin and emerge as someone carrying a lighter load. Just for today. 

But there is no break. I know what the work is, the slog. It’s all about redirecting. There’s nothing to take head on here. There’s no point to that. Searching for resolution is misdirected energy. Distraction is the name of the game. I have a bag full of distraction tricks. I just have to reach in and grab one. 

Which would require moving. But I’m sitting on my bed, staring at the carpet, observing nothing about it.  There is a formless hump at the far end of the carpet that I know is my clothes from last weekend’s trip, but it’s just a pile without edges because my eyes aren’t really focusing anyway. 

Get up. 

I sit. With not one thought in my head. I am void. Empty. I am an expressionless concrete statute, sitting on the bed in a silent house. I took the day off work so that the girls and I could make memories out of a spa day. But there were no appointments available. I kept the day off anyway, but now I’m staring towards one undefined area of the floor trying to think of what to do with myself.  My girls are sleeping. Jon is at work. It’s just me and the floor and the pile of clothes. 

Get up. 

Get up.

Get… 

…up

“What if I just picked up two things from that pile?” I hear myself think. I’m thinking. That was me thinking. This is good. I lean over and get up. I trudge towards my laundry and hover over it for a second. 

Fuck the laundry. I need to make myself well and cleaning is not in my wellness bag of tricks. I’ll continue to allow my room to look like a teenager’s. (Side note: I have two teenagers and for the record my room is cleaner – if only slightly – then theirs. So, I figure I’m good there.)

Instead, I put on my ski pants. Being outside. Being active. That’s what I need. I already scheduled to take the day off of work. With no other obligations, I’ll indulge in a peaceful, solo ski in the woods.  Oh, that sounds lovely. Keep moving. That will help.

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It’s snowing when I get to the trails. A wet snow, and blustery. I don’t recognize the three other cars in the parking lot, but I feel a tightening in my chest anyway. We live in such a small town, there’s a pretty good chance I’ll know these other skiers. And then maybe have to talk to them, and I am sure they are in a different mood than I am. I doubt I can fake it today. I feel a disproportionate flood of relief when I pull in to a parking spot and see that the other skiers are already out on the trails. I’m alone. Phew.  

But it’s not a good ski day. It’s a fatigue day. After only 5 minutes, I’m so exhausted I have to stop and rest. I ski slower to avoid the nausea. I take two breaks on the next hill, but when I get to the top, I’m still so nauseous I have to lean my ski poles and spit in the snow for a while. I consider turning around. But figure I’ll just adjust my expectations instead. I slow way down, way, way down, until the fit healthy 30 something skier that passes me asks, “Are you alright?”

“Yea,” I lie. “I’m just fine.”  

Turns out it takes well over an hour to walk 3 miles on skis.  I was hoping the ski would pull me out of my head and in to the present. 

Hope. 

I’ve been thinking a lot about hope in the context of stage IV cancer recently. I’ve been wondering if hope is a healthy thing for the terminally ill. It seems so basic at face value. Yes! You have to have hope! I started out as a stage IV cancer patient with hope. Hope that I’d be one of the ones who make it longer than average.  I hoped to the point of believing. Even after that first med, the one that I only made it a year on, when the average amount of time people get is 22 months. I hoped the next one would work better. It didn’t. And hoped with the next one. Not that time either. 

I feel like hope just makes the ground all the harder each time I fall.  Like hope just lifts me up higher so the impact is more devastating when I get slammed down on the ground.

I don’t think hope is helping me. But it feels so wrong to give up on hope. 

I’m starting to feel my hope as a thin veil, a sheer layer dissolving into desperation and sadness, so that hope only feels like denial. My hope is that I can get out of this windowless, doorless room that I don’t belong in. I’ve been working on acceptance and have achieved it to the point that I’m no longer scared. But that acceptance has filled me with such grief that I’m that statute staring at the floor. 

I wonder what it could feel like to have acceptance and hope at the same time. And that’s a lot to get my head around. Because if I’m not hoping for a cure, what do I hope for? Hoping for a cure is easy. Since it’s completely out of my control, it requires no work of me. I can just throw that hope into the universe, cross all digits and wait. 

Here’s the thing. I won’t just wait with that hope. Through 8 years of cancering, I can’t remember a time I was passive with it. The desperation side of a hope focused on escaping this will lead me to logging in to clinicaltrials.gov every day to scour possibilities. I’ll google immunotherapy and start digging into the published oncology papers.  I’ll work to keep an eye on those researchers, and the miracles they’re concocting, to make sure I’m in line for my flask of magic potion. I will do this incessantly while hoping for a cure, fixated on the science outputs of strangers while I’m unable to look the people around me in the eye. It’s so exhausting I find myself eager for the end of the day sometimes. I just want to go to sleep, to not have to deal with my waking life. 

I need a new hope. 

Which I can’t read, write, say or think without matching it to the tune of the Huey Lewis and the News song “I want a new drug.” I find this enormously encouraging. When these little bits of normalcy slip in the icky process of processing cancer, I’m reminded that I’m still in there. I just need to make more space for the part of me that’s outside of cancer. Making space for a better soundtrack might help quite a bit too. 

When I was rolling all these thoughts around with my friend Tammy recently, she asked me, “What part of your experience would you like to be better?” 

And that’s the question I’ve been thinking about that for a couple weeks now, but I haven’t been able to stop spinning enough to come up with a real answer. Not an answer with easy, far away things, but tangible, in-my-control things. I think there may be a beacon at ground level in the answer to that question.  One that revolves around getting out of my head enough to live beyond just enduring and finding joy in the moment.  

I know that’s where I need to be. In the present. In the moment. Because today is my birthday. And I am trying like hell not to think about how many more birthdays I get. 

So today, I hope I can go home, have dinner with my family and be present enough to listen to them. I hope I can quiet cancer enough to look at Jon and my beautiful girls and see every bit of them right now, in this moment. Because I get right now. I hope I can start taking some of the phone calls I’ve been ignoring all day and feel how lucky I am to be cared about this much.  

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I hope I can open myself up enough to receive the love people are pouring all over me. 

So cancer, you asshole, you’re not invited to my birthday party.