Blocking and Unblocking the Sun

Since being diagnosed with terminal cancer, I have had one goal: to live long enough to see The Girl start kindergarten. She was 2 and a half when I got diagnosed back in March of 2014, and starting kindergarten in 2017 would fall past median survival for me. Thinking about her having to start school without her mother brought me to my knees every time I thought about it. It’s the thing that would bring me to tears, that would break my heart–it was my biggest fear, by far.

Today, The Girl went to her first day of our district’s Kindergarten Jumpstart. It’s a week-long program for kids entering kindergarten, a couple of weeks before the official start of school, where the kids get to meet the kindergarten teachers and some of the other school staff, and learn the layout of the building, and meet the other kids, and just start to get a sense of what elementary school is all about. No, today isn’t the official first day of kindergarten for The Girl, but it’s close enough.

And I’m here. I’m alive. My recent MRI testing showed no signs of leptomeningeal mets. I’m still dying slowly, but I’m no longer staring hospice in the face, and The Girl has started kindergarten. This is the day I have dreamed of for three and a half years, and it’s here. It’s here.

How did the first day of kindergarten go, you ask? Perfectly normally. The Girl was excited and nervous at the same time, and was scared when it was time for Mom and Dad and The Boy to say goodbye at drop-off, but she powered through with the promise of ice cream after school was done. I’m guessing millions of other families had a really similar first day of kindergarten experience today. Being normal when your life is anything BUT normal is pretty amazing.

I like to think of myself as a pretty good writer, but I have absolutely no idea how to describe this feeling. I mean, none. Maybe because it’s not just one feeling–it seems to be a collection of relief and pure joy and PTSD and reliving all the awfulness of the last 3 years and pride in my big little girl and holy hell, just everything, all at once. It seems fitting that today would be a day of a solar eclipse, a time where the sky makes us stop and take in the amazing wonders of our world, to experience darkness and lightness at the same time.
#BestDocEver says I need a new goal, and he’s right. I don’t know for sure what it’ll be–I would love to be the mom of a teenager, which is almost 3 years away. I’m not sure my heart can take 3 more years of the kind of hope and terror I’ve been living with…but I’m not sure I can muster the strength it takes to keep living the metastatic life without that combination of hope and terror. The time I spent believing that I had lepto mets and only had a few months to live, I lost all will to do anything. I didn’t even care about advocacy work. The depression of that hopelessness was pretty intense, and obviously wasn’t good for me. So, maybe looking towards parenting a teen isn’t a bad goal?

On Aging

You want to know what’s most ironic about me having Stage IV cancer? For years, I have been dreaming about how awesome it’d be to be an old lady. No, seriously, old age kicks ass. Let me explain why.

The Hubs and I have been on a lot of cruises, and one of the things I like best about a cruise is that the age of passengers tends to skew pretty old. Old people have the BEST stories, so they make the most interesting dinner companions. One cruise, The Hubs and I sat with a couple of old ladies from England, and man were they a trip. It was so interesting to listen to them talk about their lives, but my favorite thing about them was that one of them would always order an extra side of ice cream with her dessert. Because she’s already lived this long, what’s it gonna do, kill her? Make her fat? Who gives a shit, she’s old.

Old is being a badass. Old is not having to care what anyone thinks of how you look or what you wear. Old is being able to tell it like it is. Old is freedom.

I went to Vegas last December with some girlfriends and we sat for a while in a bar at the Paris casino, and listened to one of the most awesomely bad lounge singers I have ever heard. Guy had a guitar and a karaoke machine and you just KNEW it was gonna be good when he started playing Margaritaville. And I turned to my girlfriends and I said, “When I retire, I am totally gonna be a lounge singer in Vegas. If this guy can get a gig, I sure as hell can.”

You know what else I want to do when I retire? Live in a senior community. It’s just like a college dorm except with Hoverounds. All your friends are in one place, and there’s a cafeteria so you don’t even have to cook, and you can hang out all day in your PJ’s, and when you feel like it, there are enrichment classes to go to and movie nights and shit. See? Just like college, plus HOVEROUNDS.

Now that I have The Cancer, I don’t get to dream about my old age so happily. I can’t just think about the future in a breezy way anymore like I used to. Old age has become my deepest desire, one I am almost afraid to hope for, because there is a good chance it won’t happen for me.

Actually, I already have the shitty parts of old age. I’m tired a lot, my hair fell out, and I spend all my free time at doctor appointments. It would be really nice to get some of the perks too. Like a Hoveround. And getting to be a lounge singer in Vegas.

So, now when I hear people complain about aging, about their wrinkles and the hair growing from their ears and whatever, I dunno. I try to keep in mind that my perspective now is all fucked up, and most people can’t see their wrinkles and their aches and pains the way I do. But mostly I just want to tell people to shut. the. fuck. up. Because there is a lot of awesomeness that happens when you’re old. Old is fucking beautiful.