August 7th, 2015

Yesterday, I spent the whole day in bed listening to a book on tape. (The Lunar Chronicles: a YA, post apocalyptic re-telling of Cinderella. Do not judge me.) Today, Heather is coming to town, and the three of us have tickets to a Cubs game. I’m supposed to be careful and avoid crowds as my immune system spirals down, but I have cleared this with the doc, and I will take hand sanitizer and medicine. I will try not to touch anything on the subway. I’ll only lick the pole once, I promise. Here’s an article if you’re worried.

Expert Claims ‘Nothing Traumatic’ Will Happen If You Lick the Subway Poles

Although I didn’t do anything yesterday, I do have something more to say about my visit with the psychologist in June. She’d asked me what the hardest thing I ever had to go through was. I told you that I immediately drew a blank. But I did, ultimately, think of something. Psychologists don’t let you off the hook that easily. I told her something about my little sister, how we are estranged, how hard it has been.

“How do you cope with that?”

“I talk to my husband.”

“How does he handle things?”

“With logic. And reality.”

“So, you’re good with reality?”

I shrugged. As long as my reality has a dose of magic in it, I’m good with it.

I went to her bathroom before I left (damn you, bladder!), and I flashed to other things that have been hard.

My mother has bone cancer and she’s doing great. It’s Atul and Reiki that have given this gift to her. She believes she’s going to live, is open to the possibilities, and a joy to be around.

But many years ago, when my mother had a triple mastectomy, her attitude was different. She had the first operation just before Memorial Day or Labor Day weekend, I can’t keep them straight. Both boobs were removed and new ones were constructed from her abdominal muscles. She was absolutely certain that she was going to die. My dad was sure she was going to live, and he kept cracking jokes about it and trying to kiss her. This didn’t help.

Over the course of the long weekend, one of the boobs started to rot. For some reason, blood wasn’t circulating. But it was a long weekend, so she would have to wait. Honestly, the whole house stank of death. My mother’s absolute certainty of her imminent demise only fanned the stench. There were a lot of tears on her part. I alternated between clenching my teeth and feeling helpless. I called my friend Amy a lot during this time, and she was funny and kind, as always.

When they took her to get a third boob (constructed from a back muscle this time), I stayed behind to scrub the death out of the house. She’d mostly been in a La-Z-Boy recliner, and I took to it with carpet cleaner and a rough sponge. I scrubbed and scrubbed, but I could not remove the wisp of death. Finally, I looked under the chair and found a dead toad. Old, petrified, and leathery.

I got a shovel, scooped it up, and flung it into the backyard. I checked under the couch. Two more toads. I found six in all, and threw them with force and anger into the yard with my Shovel of Toad Vanquishment.

Later that night, I stood at the back door. Three of the toads had gotten stuck in a tree by the crooks in their arms. I felt like I was sending a singular warning to whomever had sent the message of death. Someone thinks she’s dying here, but she’s not going to. Not on my watch. I’ve banished the toads.*

*My mother wants me to tell you that it was her cat that brought in the toads. This didn’t seem relevant to me when I wrote this yesterday, but now I’m imagining someone following me around, placing dead sparrows (Lance!) around my room in an ominous manner. So, okay, it was the cat.

Chemo, Round 1, Goes to…

August 6th, 2015

Remember yesterday when I felt fantastic? Back when I’d crushed chemo?

Because I am such a winner, Chris and I toddled off to the Art Institute on our Divvy Bikes. He’s never been there, and it’s one of the most amazing museums in the world. And even though all the doctors say to make sure you stay ahead of the nausea and take the meds as soon as you feel it, we leave the meds behind. I’m not chemo’s bitch. Chemo is my bitch. Chemo can suck it.

Here’s a picture of me and Chris in front of the Chagall Windows.

photo (7)

So we’re wandering around the Impressionism section, and I’m thinking about writing. The amazing thing about all of these paintings is the voice of the painter. These paintings all took talent, skill, and practice, but the thing that got them in this museum is their unique voice. This is true of writing, too. It’s what gets a book published.

I’m somewhere near the water lilies and haystacks when a wave of nausea hits me. I tell Chris, and we realize we don’t have any medicine. “Do you want me to ride back and get it?”

No. Jesus. Don’t leave me here. If I throw up in the Monet water lilies, that Finnish couple will eviscerate me. “Let’s just sit for a minute.” So we move on, sit and feign interest in the Seurat painting, A Sunday Afternoon on the Island of La Grande Jatte. Chris is watching me.

“Do you want to leave?” Chris is here to take care of me, after all. Now’s his chance. The attention feels heavy.

“No. I just need a minute.” We sit, then proceed through the armor, the paperweights, and the miniature rooms. I’m exhausted, truly, and also astonished. Those miniature rooms…what kind of person was Mrs. Thorn to have made so many exquisite dollhouse rooms?

I press on.

I need to sit.

Chris wants to know if I need to take a taxi home or if I want to take the bikes. Because a taxi is his idea and not my idea, I choose bikes.

I’d joked with him earlier in the week about this stubbornness. Whenever he suggests something, I say no. Then I wait fifteen minutes, long enough for it to be my idea, and then say yes.

His reaction to this had been: “Do you want the D?”

I’d laughed. (If you don’t know what the “D” is: He’s a man. Think about it. All men can wait fifteen minutes for this, even with stubborn wives.)

Anyway. We bike to the hotel. And while the bike ride to the museum was a joy, the ride to the hotel is a slog.

All I do that night is lie on the bed and listen to a book on tape with my eyes closed. I can’t do anything else. I smell the chemo seeping out of my pores, warning me to pay attention. 

Hello, Goodbye Ghost

August 5th, 2015

I feel fantastic today, and it’s hard to believe I had chemo yesterday. I’m ditsier than normal, but that’s kinda fun. I bought tickets to the Art Institute of Chicago (tried to buy them with a Starbucks gift card first, but that didn’t work). Also, I told Chris that that the distance to the Art Institute was halfway to Northwestern and then that distance again. Chris said — so the exact distance to Northwestern? At first, I thought he was the one being dumb. He can’t be smarter than me all the time, after all. I’ve come to realize that the anti-nausea meds are really, really nice.

Chris and I plan to ride bikes to the Art Institute later today. He’s going to work all morning, and I am going to write a blog (ta daa) and work on my book. (I do have work I could do for work, but I have to concentrate for that, and I’m not ready to concentrate.)

But, I have even better news. My Secondary Progressive Ghost is gone. I need to backtrack a little bit for you to understand. After my second trip to Chicago, Dr. Burt’s nurse calls me to tell me that I have tested positive for the antibody for Devic’s disease. She sounds really sorry, like she is breaking terrible news.

Okay, roger that. But no big deal. I’ve had this for fourteen years, so I’m pretty sure I’m familiar with what it does. And the great good news? There is no secondary progressive form of Devic’s.

Poof! There goes my ghost.

A quick search of Wikipedia says this: Spinal cord lesions lead to varying degrees of weakness or paralysis in the legs or arms, loss of sensation (including blindness) and/or bladder and bowel dysfunction. Also, it is rare, so it is poorly funded. And, as a bonus, it’s devastating to a lot of people.

Unless you want to cry, do not search the web for people’s personal accounts of Devic’s disease. (Just read about mine.)

Then the nurse calls a few days later to say that the Mayo Clinic said my Devic’s results were negative. That first test was wrong. But, Dr. Burt still thinks that this is probably Devic’s, based on how the lesions look. He has a protocol that is specific to Devic’s. It’s just like the MS protocol, only a little more aggressive.

Just the head and the eyes of my ghost emerge from beneath the floor, as if it is asking permission to come haunt me again. Of course it can! Back at my side, my ghost and I can worry again that we don’t really know what this is. Secondary progressive, Devic’s, something as-yet unnamed. We have no idea if anything will work. It’s a smorgasbord of disease! Haunt me! (I’m pretty sure it’s my anti-nausea meds that are making me put in all these exclamation marks. Just forgive me.)

So yesterday, Dr. Burt and 4 residents are in the hall. I hear him tell them that I am a Devic’s patient. They swoop in, all smiles, to meet me, pathetic with my catheter, my IV, and my dirty nightgown. (My nightgown is dirty because the chemo is sweating out through my pores, and it stinks.) They meet Chris.

They ask me a question. “How are you feeling?”

“Fine. The catheter hurts.”

“Next time around, we’ll give you xxx or xxx for that.” Dr. Burt mentions drug names. Chris writes them down. The docs leave.

Later, his NP comes in. My ghost and I have some questions for her. “So, do you see a lot of Devic’s patients who don’t test positive for the antibody?”

“Oh yeah. All the time. About half of ‘em.” She speaks in a Midwestern accent and is a little bit adorable.

“Did you see my MRI? Does it look like Devic’s to you?”

“Oh yeah. You betcha. It’s Devic’s alright. Pretty classic with lesions all down your spine and everything.”

I don’t even see my ghost leave. Although I’m sure it won’t have trouble finding someone else to haunt. Good riddance, Mr. Meany-Pants Ghost. Chris and I are going to go ride bikes.

One last thing. All the literature I read about preparing for this experience says to keep an inspirational photo by your bedside. I choose Lance, the tree swallow with the peanut glasses.

photo (6)

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.

Second trip to Chicago

July 31st, 2015

I leave for Chicago on Sunday.

So, I should get back to this journey. Fast forward to June. My insurance approves the set of preliminary tests to see if I am healthy enough for a stem cell transplant. They have not approved the transplant yet — and will wait to see how these tests go. Echocardiogram, EKG, blood tests galore (17 vials worth), a meeting with a psychologist. First I have Scott and Mark’s wedding (LOVE WINS), then a Girl’s Weekend of Evil (GWOE) with a group of girlfriends in Colorado. We’re not very evil, unless lolling about, making delicious meals, and drinking wine is evil. Then we’re top notch.

Here’s a picture of us.



Then Chicago. I need to decide if I want company for Chicago. I only have one meeting with Dr. Burt. I think I can do everything else on my own, probably all of it. I ask my friend Nina if she thinks I should go with someone, and she says, “I’ll go.”

I tell her I’ll think about it. This won’t be a fun trip, and it seems like a lot to ask. I check in with Chris to see if he is willing to go, but first I say, “I don’t really need you to, just that you’d be nice to have, but I can do this on my own. We could go to a fancy restaurant?”

Turns out, it would be complicated for him to go this time. Plus I said I don’t need him. And he’s going for the August and September dates. I wonder if I should go alone and treat this like a writing retreat?

Nina texts me out of the blue: “You know I like your company.”

But what if I want to curl in a ball and just be alone? What if I get the opportunity to work on my book?

I talk to Joey about it. She tells me that going alone is a recipe for me being lonely and sad, and that I should stop being a dumbass.

So, I ask Nina to go. If Nina lived during the time of the Salem witch trials, she would have been burned at the stake. For sure. She’s too smart for mere mortals. She has big ideas and she shares them, plus her hair comes straight from the sun: long, red, and curly. She’s good company, though. I know this from long, lazy afternoons on a blanket in her yard, watching our children and her chickens, and solving the mysteries of the universe.

I book a flight for us. I don’t need an extra ticket for my ghost of secondary progressive MS, although it still haunts me. It’s bigger because it’s feeding on my fear that insurance will say no.

Nina talks to me about calculus, the murmuration of starlings, neuroscience, and changing the way people learn. Like I said, she’s good company, and my ghost and I listen and ask questions.

I’m pleased to show her that I know the way on the metro, but then we get lost and can’t find it, and she has to figure out where to go. I still bumble getting us train tickets, but I get them. We get to the hotel, go out to eat, and I fall asleep by 9:00.

Nina walks me to my first appointment, meets me for lunch, and goes with me to see Dr. Burt.

I ask him about secondary progressive MS.

“Has somebody told you that you have secondary progressive MS?” Dr. Burt asks.

“No, but nobody’s told me that I don’t have it either.”

“Why are you worrying about it?”

“Because I read in your paper that this doesn’t work in people with secondary progressive MS. No one will say one way or the other whether or not they think I have it, and I fit the profile.”

“Stand up. Let me look at you.”

I stand up. He looks at me.

“You don’t have secondary progressive MS,” he says.

“How do you know?”

“If you did, that leg would be spastic.”

“This leg gets spastic sometimes, like, when I put it in cold water.”

He shakes his head and waves my worry away. My ghost is unfazed. It will take more wind than that to dissipate it.

In the lobby, Nina says I totally nailed that appointment and she hugs me. She says I seemed like a person to be taken seriously, and this pleases me. She walks me to the psychologist, who wants to know if I have a support system. Why, yes. Hell yes.

She asks me what the hardest thing I’ve ever had to go through is, and I draw a complete blank. I’ve got GWOE, climbing, a great job, wonderful friends, and a lovely family. I’m mostly the luckiest person in the world.




Dark Shadows

July 29th, 2015

I leave for Chicago in three days.

I like to do yoga. I can balance all day on my right foot. Tree, half moon, dancer, you name it. On my right side, I rock out with my cock out. But my left side is different. I’m wobbly. My yoga teacher, Jen, told our class once that it doesn’t matter where you are, just find your edge, and work there.

I think about this advice when I go rock climbing. My climbing friends are true badasses. When I met Gina and Tracy, the Pixie Titans, they were making 5.12s look easy, even though they are only, like, five feet tall. I figured they were way too cool to be my friends, as I was stuck on 5.10s. This was stupid, or course, and we’ve been friends for years.

(To the uninitiated, all free climbs are rated from 5.1 to 5.14. A rating of 5.1 to 5.4 is dead easy, 5.5 to 5.7 is still easy, 5.8 to 5.10 is moderate, 5.11 to 5.12 is hard, 5.13 to 5.14 is in the realm of professional climbers and a few of my friends.)

I’ve come to learn this: it doesn’t matter how hard I climb. The people I climb with are my friends, and we have fun together. As long as I can find my edge and work there, I’ll find the joy. I have to let my ego go. Some days, my edge is 5.7. Fine. I like 5.7s. They’re fun. If I don’t want my MS to stop me altogether, then I have to accept my edge for what it is.

Last year, I set up a climbing trip to Red Rocks near Vegas with the gang. I figure my edge is 5.8 trad. (Here’s a little more explaining, trad [or traditional] climbing is a type of climbing where you use ropes and gear to catch you if you fall. You place gear in the rocks as you go, clip your rope to it, and climb using the rocks. [Pulling on gear is a different kind of climbing, and is considered bad form in trad climbing.] If you fall, you will fall to your last piece of gear and then that distance again. Well, this is true if your gear is good. If your gear is bad, your piece will blow, and you will fall to your next piece. And if that piece is bad, well, you will fall a long way. I try to only set good gear, because moving off a piece you know is bad will mess with your head when you climb.)

I decide I want to do a mulit-pitch climb in Red Rocks. I need a short hike in because I don’t want my leg to go dead before I get there. I choose a 4-star 5.8 called Dark Shadows. The book says it has a casual 40-minute hike in. It’s 4 pitches: the first is 5.5 & 70 feet, the second is 5.6 & 75 feet, the third is 5.8 & 120 feet, and the fourth is 5.8 & 73 feet.

Here’s the map and the picture of the climb from the guidebook. The climb is #9. You’ll see I’ve circled something on the map. I’ll get to that later. But first, I need to pick a partner who knows about my leg, is willing and capable of bailing me out if I need it, and who will swing leads with me, which means I want her to lead the first two easy pitches, then I will lead the long third pitch, and she will lead the forth. I pick Krista. To the horror of my friends, I tear the map out of my guidebook and stick it in the pocket of my climbing pants. It’s my book. I don’t want to carry it, and I need the map.

photo 1

We get up early that morning. On the drive there, I decide that the worst thing I can do is back down. If it is too hard, I should still try it and take the fall. In my mind, if I back down, then that means MS has won. I’m the winner here.

.photo 3This is the picture of the climb in the guidebook. Looks fun.

IMG_3731The hike takes us two hours. The mountains are confusing, and it’s hard to find the right path. There’s a climbing party ahead of us, which is lucky because it forces us to wait while my leg recovers, and I don’t have to ask to wait, which I am bad at. My heart is in my throat, though, and I wonder why I decided that my edge is 5.8. Maybe my edge is 5.7.

When it’s our turn, Krista climbs the first two pitches in one go, and I meet her on the ledge. She gives me encouragement, but I don’t remember what she said. Something like, “You got this.” I start up the climb, place some gear, but I’m finding it really hard. What have I started?

“Is the crux at the bottom?” I ask. (The crux is the hardest part of the climb.)

Krista doesn’t know. I put in some gear and fish the map out of my pocket. The instructions for this pitch are as follows: “Climb the huge corner to a small ledge on the left. The crux is at the bottom, after which perfect holds appear whenever things start to get difficult.” That’s just the kind of magic I like. Perfect holds. I put the map back in my pocket. I’m at the crux. I figure I will do the crux, then the rest will be easy.

I fight through it, and I am golden. Also, I can sew this shit up. This giant crack eats gear, so I put in a piece about every body length. Even if I fall, I won’t fall far. I am capable and competent. I got this. I ROCK. La la la.

When I think I am almost at the top, I see the earlier party rappelling down about 50 feet away.

“Is the top just over that bulge?” I ask.

“No. You’re only about halfway there.”

Electricity shatters through me. I check out my rack of gear.

“I only have four pieces of gear left,” I say to the guy.

He looks down at my line and all the gear I’ve stuck in the crack below me. “If you’re strong enough to hang out and place all that gear, you’re strong enough to make it to the top.”

If you take another look at the map, you will see where I circled a black smudge. That’s a person-sized crack, and that’s where I was. I’m 60 feet from the anchors. Four pieces of gear.

photo 5

I stuff myself into the crack so I can panic. These were my thoughts: “Fuck. Shit…..Fuck. Fuck.” I’m pretty sure that’s all I thought for quite some time.

Krista calls up to me. “Everything alright?”

“I only have four pieces of gear left.”

“Run it out, baby,” she says.

I contemplate my options…this is a nice crack. I could stay here for awhile. I think I love this crack. It’s cozy. This is a forever crack. Just me and the cliff swallows….

Another climbing party comes up behind Krista. I can’t stay here. That would be rude. I could use my last pieces to build an anchor and back down. But I already made this all big in my head about not backing down. If I back down, then MS wins. Why am I a fucktard?

I remember that I’ve already done the crux. I pull the map out of my pocket again and re-read the instructions…“perfect holds appear whenever things start to get difficult.” I’m totally on board with this kind of magic. I pull myself out from the crack. Perfect holds. Let’s go.

I make it to the top and clip into the anchors. When Krista gets there, she takes this picture of me.

IMG_3734 2

This, my friends, is what joy looks like. This was my edge, and I worked it.

Later, when I am relaying this story to the Pixie Titans and Nick, who’s strong, young, fit, and looks  a tiny bit like Wolverine from the X-Men, Tracy says she doesn’t know if she would have kept going.

“Helicopters. I would have waited for Helicopters,” Nick says.

Fuck you, MS. I’m the winner here.

IMG_3741 IMG_3737

What have I told the kids?

July 29th, 2015

I leave for Chicago on Sunday

I’ll continue my story about how I got here a little later. For now, here are some details. This Saturday, August 1, Chris is going to drive halfway to Pennsylvania to deliver my kids to their Pop-pop and aunts. Chris’ll drive back that night, and the kids will go to State College for two weeks of soccer camp, ice cream, and family. Chris and I will leave for Chicago Sunday, August 2.

On August 3, I will be admitted to Northwestern Hospital overnight for one round of chemo. I will be discharged the next day, and Chris and I will stay at the Residence Inn on the Magnificent Mile. According to my sources, I will feel like shit. But then I will feel better, maybe even good enough to go to a ball game (at least, this is what Chris thinks, apropos of nothing besides a desire to see the Cubs.)

On August 8, I will start Neuprogen, which will mobilize my stem cells from my bones and make them ache. On August 13, they will harvest the stem cells. They may need to do it again on August 14, and we fly home that day.

I’ll be home, working and playing for 3 weeks. (I hope I feel good enough to work. I know I’ll feel good enough to play.) The kids will start school. I will go to PTA meetings and go climbing at the gym. Chris and I will lift weights and look sexy.

On September 7, I will return to Chicago for 3 weeks. My parents will come and watch the kids. I’ll be in a bubble in the hospital the whole time, and Chris will have a hotel room to himself (lucky). Five days of chemo, rest until levels equilibrate, then stem-cell infusion. These cells will form my new immune system, which will be like a baby’s. In a year, I’ll have to go get my immunizations. They say no flowers, no fresh fruit and vegetables, no touching soil, no cleaning up poop, etc, for six months. In other words, please don’t lick the walls or your friends.

People keep asking me what I’ve told my kids. I’ve said this: “You know how I have a MS and I can’t run or wear high heels?”

They nod. They want me to run so I can chase them. I know it. They are 9 and 11.

“Well, there’s a new treatment, and it might fix all that so I’m going to give it a try. One of the medicines is chemo, so I’ll go bald. It’s the same treatment as what they give to cancer patients, but I don’t have cancer.”

Zach says: “I don’t want you to come near me if you’re bald.”

I say: “I’m going to rub my head all over your arm, and you’re going to like it.” He laughs.

To Maddy, I say, “You know, I might wear high heels to your prom, and I will chase you, and catch you, just because I can.”

“They won’t let you in,” Maddy says.

“Yes they will. They let parents chaperone.”

She looks frightened. “Even the crazy ones?”

“Especially the crazy ones.”

“I’m going to hide under a desk.”

“You won’t be able to catch me,” Zach says.

“I will. I’ll be really fast,” I say.

“Yeah, but you’ll be wearing high heels. That’ll slow you down.”

So my kids are good. They know what’s up.

A Haunting

July 28th, 2015

T minus 5 days until I leave for Chicago

I’m still telling you the story from back in March — and here we are in July; I’ll get caught up quickly. I promise. I think it’s funny that some of you are most surprised that I play bridge. When I am 90, I’m going to be wicked good at it. I’ll wear a visor and everything. Also, some of you have asked if you can share this blog. Of course you can. Especially to anyone who has MS and is thinking about HSCT.

The day after I return from Chicago I find a Facebook page for people who’ve undergone this treatment there. Someone just rode a bike for the first time in ten years. Someone just stepped out of a wheelchair. I spend the entire day reading this page and crying. Why am I a sad sack? What do you call a deer with no eyes? (No eye deer.)

Also, one thing I learn from the FB page is that insurance denies this procedure a lot. Many people are having long-drawn-out battles with their insurance company. (Is this foreshadowing? I would be if I hadn’t already told you that I am leaving in 5 days.)

I have the informed consent form. I know from my job that this is supposed to be easy to read — pitched at about a 6th- to 8th-grade level. This form is 20 pages long, single spaced, so it must be designed for a very smart 6th grader. I figure that I want this treatment so badly, I am probably reading this for what I want to understand, not for the truth. I would have preferred for the nurse to walk me through it, step by step, with the form in my hand so I can ask questions. Instead, I send it to my friend, Cheri, who is lovely and wise, especially about this sort of thing.

She says that everything looks good, but suggests that I speak with a few other doctors. So, even though I just want to keep the ball rolling, I set some things up.

This is what I get:

  1. From my neurologist. I wouldn’t bet the money and the farm on it, but if you have the time and a big wad of cash, I’d say it’s worth a shot.
  1. From a doctor that specializes in stem cell transplant: I don’t think autogenic (using your own stem cells) stem cell transplant will work in the long run. MS is like a grenade. Pins need to be pulled from it in a certain order, and we don’t know that order. One of the pins might be a pre-disposition to MS. He recommends Allogeneic (a sibling’s stem cells). My sister, Laura, gets tested, but she is not a match. The nurse calls to say that we are dead in the water. Those were her words.
  1. From another neurologist: You are not progressing enough to have this treatment. I don’t think it will work. Also, I have no way of telling if this has progressed to secondary MS, and this doesn’t work if you have secondary MS. (The specter of secondary progressive MS raises from a far-off graveyard to haunt me.)

I email my neurologist to ask: What do you think the chances are that this is secondary progressive MS? I get no response. The hauntings increase.

I re-read the JAMA article. Sure enough, they tried this on people with secondary progressive, and it didn’t work.

Okay. So, the FB page. I could ask them. I pose the question, then stalk the webpage, with my little secondary progressive ghost peering over my shoulder the whole time.

The response is overwhelming. Do it. Do it now. Trust Dr. Burt.

I don’t want to trust him. This is the MOST unscientific way to proceed, but my ghost and I schedule the next set of appointments in Chicago.

Chicago and the Honeymooner Ladders

July 27th, 2015

T minus 6 days

The next day we take the Hiawatha train into Chicago from Racine. I take a Xanax to take the edge off, but my edges are so jagged that it doesn’t do anything. I’m a porcupine.

Dr. Burt asks me the same questions as yesterday, and this time I tell him everything. He says, “You don’t have an enhancing lesion.”

This means I am not in the trial. I think to myself that it’s okay. I was okay before I came. I should know better than this. Why did I think this would work?

“I gotta tell you, your cervical spine is moth-eaten. You’re headed for disaster.”

I wonder if he is intentionally trying to be cruel. Doctors are mean.

He puts his head in his hands and rubs his face. He lifts his head and says, “I’m going to treat you out of compassionate care.”

I know what this means. He’ll treat me, but I won’t be a part of the trial. This is what they do with dying cancer patients who want to try a new miracle cancer drug that hasn’t been approved by the FDA. I’m pretty sure I’m supposed to be happy, but I feel broken. I tell him thank you, and we leave. I have no idea how I get to the lobby. I suspect that Heather led me.

My flight home is delayed by four hours, and I play candy crush the whole time.

When I get home, my husband is overjoyed, but I’m having trouble feeling happy.

For some reason, I keep thinking about the honeymooner ladders. Let me explain this a little bit. I’m a rock climber — I’ve been one for over 25 years. I have a gang of friends that I go climbing with — and we take big trips and little trips, and we often go to West Virginia to climb at the New River Gorge.


Here is  picture of some of the ladies in our crew. For your reference, Stephanie is the second from the right, and Krista is right behind me. This was last year at Red Rocks.


The approach to Endless Wall involves a 60-foot stretch of ladders called the Honeymooner Ladders: wooden ladders at the top of a canyon, orange cliffs all around, a river flowing and falcons flying way below you. This was the work of elves, for sure. You climb down the ladders to access the cliff faces, and at the end of the day, you climb up the ladders. Easy.

This was about two or three years ago when my leg had been getting weak when I got tired. When it gets weak, it’s like the leg starts to fall asleep. First it falls asleep a little bit (20% gone), then more (50% gone), then more (80% gone). Eventually, it’s like swinging a dead thing, and I use trekking poles to keep going.  And if I rest, it recovers. I kept the fact of my leg’s weakness 5 miles away from me. I did not like it.

So, it’s the end of the day, Krista, Stephanie and I decide to hike out. We have ice-cold beers waiting for us at the cars.  It’s hot and muggy, poison ivy is everywhere, and we’re a long way from the Honeymooner Ladders. When we get there, my leg is already 40% gone, but the ladders have never bothered me before. I don’t want to inconvenience my friends. I decide to rest at the top.

Krista starts up first. I wait for her to get about 20 feet ahead of me before I start. I get about halfway up when my leg goes away. Gone. Stephanie calls up to me. “Everything all right?”

“My leg is dead.”

“Oh.” She says. There really isn’t any more that she can say. I look down at her. She is looking up at me.

Panic makes my skin tingle and tears are pressing at my eyes. Going down makes no sense. I’m halfway.  My vision closes in, so all I see are the ladder rungs in front of me. What am I going to do? Focus. I figure I’ll hold on really tight, and if my leg blows, I’ll be able to catch myself with my arms.

There is not enough air in the air.

I go up one rung. Reset. Breathe. I’m over-gripping. I should relax my hands or they’ll get too tired.

I go up another rung. I shake my hands out.

As long as I take this one rung at a time, I’m pretty sure I’ll make it. And I do. Eventually, I make it.

When I get to the top, I’m trying not to cry. Krista touches my arm and says, “It’s okay, you can cry if you want to.”

So, I cry. Stephanie comes up and says, “Well, that was really scary.”

She sees me crying.  “Want to watch me do my arm exercises?”

She makes her arms trace small circles then big circles, and she succeeds in making me giggle. I rest. We walk out. Later that night we eat pizza and drink beer.

That fear, though. It’s the same as what I fear about MS. I reckon it’s garden variety fear. We all feel it sometimes. The true thing is this: I can’t keep MS 5 miles away from me anymore. It is closing in, and I need to pay attention.