Harvest Moon

August 4th, 2015

I went in yesterday at 7:30 a.m.; they drew labs and started fluids. Then at around 2:00 p.m., they started the chemo.

Have you ever been up all night drinking, and when you wake up you might be drunk and hung-over at the same time? And throwing up might be a good choice? That’s pretty much what chemo feels like. I confessed about the slight bladder problem (I’ve already confessed to all of you, so what the hell), so they catheterized me because the chemo is toxic if it sits in your bladder. It was uncomfortable, icky, and made me feel like an invalid. I’m woozy, sleepy, and I have a headache, but at least I was released from the hospital today.

Dr. Burt wants the stem cells, not the MS-laden immune system, and this is the process: depress the immune system with chemo; 4 days later, give me nuprogen to mobilize stem cells from the bones. When the immune system is at its lowest and the stem cells are at their highest, harvest the stem cells. (There might be some stem cell processing and cleaning.) Saturday I start nuprogen, which will make my bones ache and make me feel like I have the flu. Then Monday I have labs drawn and Thursday they harvest stem cells. Friday home (Aug 14).

Depending on how I feel, Chicago is our oyster from now until Saturday. We’re hoping to make it to the Art Institute and a Cubs game. Tonight, I’m going to FaceTime with the kids to watch Big Brother.

Chris and I might have some fun together in the in-betweens.

I’ll be back Sept 6 for three weeks: 5 days of straight chemo to severely suppress the immune system. Two days later I get my stem cells back. Then I wait for the immune system to grow enough for me to be released into the wild. (I can have visitors then, BTW.)

Chris and I already took a babymoon when I was pregnant with Maddy; it’s like a honeymoon, only you are pregnant. I wonder what this is, a Harvest Moon?

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.