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Tomorrow is chemo
August 2nd, 2015
Chris and I are in Chicago. He drove halfway to Pennsylvania yesterday to drop the kids off with his dad, who drove halfway to us. I went to brunch, Jill came over and helped me reorganize my bookshelves, and then I visited with the girls. Maddy called me twice, in tears both times. She just wants to be with me, and I know that. I get that. I want to be with her too. I told her that all she’s got to do is be brave and be kind. (That’s totally stolen from a song by the National, but she doesn’t know that.) She’s my best girl.
Tomorrow (Monday) I check into Northwestern for a round of chemo and an overnight stay. Tonight, Chris and I are going out for a big, fat steak dinner. I was really anxious yesterday, but today I’m not as anxious. I think it’s because I’m actually on my journey.
Instead of thinking about chemo, I’ve been thinking traveling, which makes me think about Bonnaroo.
Last year, my friend Melanie called to say she wanted to go to Bonnaroo. I like to travel with Melanie. I think of her as a funnier, prettier version of me. It’s my general rule to say yes when people invite me to things.
But here’s the problem. It’s a bladder problem, so stop reading now if you‘re too much of a pussy to take it. My bladder doesn’t empty all the way. The muscles are too weak, meaning I have to pee all the time. My bladder is always full. So, if I drink a cup of water, 30 minutes later I pee a cup of water. In, out, in, out, all day long. It would seem pointless if I didn’t need hydration to survive.
An announcer keeps going off in my head: Bonnarooooo! 120 bands, 85,000 campers, 12 porta-johns… I’m sure there will be more porta-johns. But, really, how is this going to work? I imagine standing in line at the toilets, waiting for an hour, peeing, then getting right back in line. Then I wonder if the ground around the porta-johns will be wet. What are the right shoes for this scenario? Flip flops? Galoshes? Full-body armor?
One of the ways I try to keep MS from breaking my heart is by not letting it stop me from doing things. If I let it stop me, well, that sucks. What if I can figure out a compromise so I can still do the thing? Enter the Tena Pad. One of my friends laughs too hard all the time and it makes her pee her pants. She swears by Tena Pads. I buy some and when they arrive, they have the word SERENITY written in giant letters across the package. Honestly. Fuck them. The last thing I feel about the pads is serenity. I feel disgust. But at least I won’t have to worry about where the toilets are…
I get it all of a sudden. Jesus, that’s good marketeering. Serenity. Well, I’ll take it wherever I can get it. And now, whenever I travel, like today, I wear a Tena Pad. For Serenity.
Melanie and I treat Bonnaroo like it is something to survive. We go to the gas station to get dry ice for the cooler, but they are sold out. We briefly contemplate going to her ex-husband’s lab to get some — he won the damn McArthur Genius Award — so he has dry ice and a whole lab of stuff we could probably borrow. We decide to stop being so neurotic and just use regular ice. We’ll be all right. We’re both brilliant, after all. We smile lovingly at each other.
The kid who tells us where to park is just wearing shorts and an orange reflective vest (no shirt or shoes). His black dreadlocks stick out of his head like a child’s drawing of a lion. (Honestly, he’s adorable, and I have to fight the urge to mother him and make sure he’s drinking water.) His vest gives him authority, and he delineates the 10-foot area that is “ours.” People are calling “Happy Bonnarooo” to each other and high-fiving. We struggle to erect our shade tent, and can’t figure it out.
We’re sweaty. We feel like impostors.
I eventually go ask the kid for help. He stares at our crooked, messed-up enclosure for quite some time. He’s clearly high. Eventually, a smile breaks across his face. “It’s inside out. Happy Bonnaroo.” He helps us fix it before he returns to his post.
Here is a picture of all the tents. Ours is one of them.
Melanie and I are testing our table and chairs when a shirtless boy, maybe a hobbit, sits down really close to our enclosure. The hobbit is rubbing his hands over his chest like he’s never felt anything so good before in his life.
“Should we give him a beer?” Mel asks.
“I reckon that’s the only right thing to do. He’s practically our guest.”
Melanie gives him a beer and says, “Happy Bonnaroo.” She high-fives me. We’re going to nail this.
We go through the gates, and Melanie high-fives everyone who will high-five her back. Eventually, I do too, and no one leaves me hanging
We continue to feel like impostors, though. To be fair, the person wearing the shark costume doesn’t even notice us. And the girl with stars over her nipples (Mel calls her Star Tits) seems lost in her own world.
We are standing under a tree near where Chromeo is playing. We aren’t dancing. But we like it. Melanie says, “Want to do some cartwheels?”
So we do. I do six in a row and get really dizzy. The music is great. Melanie and I are laughing. And without even thinking about it too closely, we’re having fun. Maybe that’s the point. For the rest of the trip we are totally there. Happy Bonnaroo.
This picture of Melanie is pure gold.
P.S. We’re back from our steak dinner. It was delicious, and apparently, worth its weight in gold. Good night.
test Filed under Stem cell transplant for MS | Comments (12)12 Responses to “Tomorrow is chemo”
Great good wishes today, Karen. I am still surprised in the infusion room. Hope you will be, too. OXOX
Good luck today..and my word for the day is now serenity!
I love these posts. Your voice is so strong. I’ll be thinking about you today and sending you love and good thoughts. Mwah.
I am sending you love all day! I know you can do this and heal! You are a gift and have all you need to make this healing journey. About your post and just letting go and being happy…I am discovering that that is all I really want. All my striving somehow keeps me from it, because when I strive toward something it means I don’t have it. Just loving myself for where I am and who I am in the present moment no matter what the circumstances is now my daily practice … Imperfectly of course. Somehow then, I am happy. I am not really sharing for words of advice. Just sharing my own journey. I love you so so much!
Oh K-Ron. Thank you for writing this. We totally nailed Bonnaroo. And thank goodness there were so many porta-johns – though they got increasingly disgusting as the weekend went on. You were eminently prepared – Tena pads, the chilly neck thingies, the camp chairs, the bacon. The truth is, those Bonnaroo kids are really so tame compared to you know, back in the day. With each story you share I realize how much of this MS burden you’ve been silently bearing on your own. I’m so glad you are sharing it now. I love you and am thinking of you all of the time. And, for the record, you’re the prettier, funnier one. I’m the awkward giantess.
Sending hugs your way. Keep those fun memories front and center. They’ll help you through.
Karen – so much here that is powerful and moving, and so appreciative that you’ve opened up this extraordinary chapter to your friends and family. You are in my thoughts today and hope all goes well with round 1!
It’s a quiet morning in Raleigh, but we’re thinking abut you in Chicago. Hope you and Chris are hanging in there. The Links are all pulling for you…
The Serenity Prayer
(I’ve Gotta Go remix)
God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
Go, Karen. Go!
I’ve always wanted to try Bonnaroo! Sounds like a blast.
I hope the chemo goes smoothly, and you can be back to eating steak toot sweet (yes, I know it’s misspelled).
Still lurking here and sending our best thoughts from the west; thanks for the stories too! Will keep checking back-
I know what it is like to be. Bald and be in public….it,s cool you get a lot of support and kindness…if you have the guts to go hatless some days I did some not….I discovered hair is overrated…I wear my hair now extremely short with jagged fringe…it,s cool and I look younger and feel younger….plus it,s easy.