Harvest Day

August 13th, 2015

Today is the day of the harvest. I need to get labs drawn, a central line placed (a catheter in the jugular vein), harvest the cells for 4-6 hours, wait for 2 hours for them to count them (I need 2 million), and then they will either take out the central line or send me to the hotel with it. I might have to go back to Northwestern tomorrow.

For the central line, the nurse asks me to look left, and he preps an area on my right neck by cleaning it and lining it with pads. A Fellow—I’m pretty sure he’s only 12—starts placing it, explaining as he goes. Then there is moment of strange silence, some hustling, and hurried, rough wiping.

“It’s because she’s skinny,” the Fellow says.

I watch the X-ray of my chest as the thin worm of the catheter grows out of it. It reminds me of the sea eels that we saw at the aquarium.

Here is a picture of a sea eel.


Adorable, right?

On my way out the door, a nurse is throwing away a big pile of bloodied bandages. That looks like too much blood, but who cares? Someone called me skinny.

Next I sit in a chair for 5.5 hours with blood circulating out of me, into a machine, and back to me. I was worried about being in a chair for that long because I would have to pee, but the bedpan is easy to use. She just sticks it on a chair. Who knew? I don’t know why I imagined that she would put it on the floor.

At the end of the day, a man in a green lab coat gets the cells, and I ask the nurse if he is trustworthy. I’ve been through a lot to get these cells, and something about the green coat makes me wonder if he moonlights as a leprechaun.* The nurse laughs. We wait for two more hours while they count.

The number is in: I gave them 9.6 million. Boom.

I fish for a compliment from the nurse and say, “Is it the really fit people who give you such high numbers of cells?”

She’s a nurse, so she sees right through me. She says no, it just depends. When she leaves, Chris says that I am superior at making stem cells. I love that man.

On the way home, I ask the cabbie to stop so I can throw up. When he doesn’t stop, I just open the door and start to lean out. He stops, and I throw up in someone’s begonias.

It’s been a long day. But now I’m done, and I can go home. We’ll be home at around midnight tomorrow.

*Chris wants you to know that he was too tall to be a leprechaun. He was 6 foot 3 inches.

What I want

August 9th, 2015

This is my third day on Nuprogen, and I’m feeling fine. I tire easily. I’m taking regular Tylenol, and that’s all. We even went to the aquarium this morning, which made me wish I’d brought my kids.

I want to wrap my arms around my kids. I miss them. I want to crush Maddy and Zach with my whole body until they are exhausted from giggling and lack of air. We FaceTime every night, but I can see in their eyes that they need to be crushed. I know they’re fine with their Pop-pop. But I need to press my cheek against their cheek, press my eyeball up to their eyeball, and blink into their eyelashes.

What else do I want? I want HSCT to work. I’d be grateful to stop the progression, and over the moon if some of it reversed. Also, as long as I’m putting things out there, I want to be a best-selling middle grade novelist. A Newberry would be fantastic. I have written a book, but just before I came here, I tore it down to the studs and used it to roughly outline a five-book series. I’m tinkering with it now.

In the spring, all I wanted was for insurance to come through and pay for HSCT. It was an ever-present thought, like a cloud that followed me around. I was told that this could be a big hurdle, and until insurance said yes, we were dead in the water. It’s hard to want something that’s out of my control. To just wait. My friend, Joey, who is powerful in a lot of ways, called everyone that she could think of to say, Hey, when this comes across your desk, say yes. No control. No power. My destiny was in someone else’s hands.

In June, I still didn’t have an answer when I went climbing in Wyoming. I was stalking my email though. Gina (one of the Pixie Titans) and Krista (who was with me on Dark Shadows and is usually with me in general) wanted to take a break from climbing to go to Yellowstone for a couple of days.

They invited me, and at first I didn’t want to go. I thought it would be a shit-show. Honestly. I’d heard all about the tourists and the traffic jams and couldn’t think of anything besides Yogi Bear to associate with it. However, I like Gina and Krista, and I needed a rest day from climbing. So, shit-show, here I come.

Here’s a picture of us.


Did you know there is a 308-foot waterfall that dumps into the Grand Canyon of Yellowstone? That much water pounds in your heart. I do not have enough poetry in my soul to properly describe it. My friend Al might, because he’s a genius at poetry, but he is more prone to writing about ordinary sorrows.

A picture will never capture it, but here is a picture.


Okay. This is not even a A Reasonable Facsimile of a waterfall. There is no point in me posting a picture. You will just have to go see it for yourself. (Truly, none of my pictures come close. I’m not being mean.)

After seeing the waterfall, I check to see if I have service. Nope.

We’re driving down to the lodge when I get a few bars. I check email, and I have this from one of the transplant nurses:

“Hi Karen,

We received verbal approval.

Do you know when you would want to come and start?”

I don’t even know what to feel. This is what I’ve wanted. I should be overjoyed, but I’m not. I feel like it’s Christmas, and I wanted Cookie Monster, but instead I got Grover.

I am the luckiest person on the planet, and yet I feel sorry for myself.

I keep this information to myself for a few minutes in the backseat of the car as we pass some trumpeter swans. I have a jumble of emotions, but one stands out. I think I’m afraid.

This “yes” from insurance makes it all real. It makes it true: I am broken.

There are some people I’ve known for years and years, and they have no idea I even have MS (well, they know now). I’ve kept the truth of it far away from me, and denial is a powerful thing. Reality is crashing in.

I’ve only been pretending to be strong.

But this is what I want. This is worth a shot. Yes, I miss the kids, and, yes, the novel is briefly sidelined, and yes, I’ll make myself vulnerable. But I have the reins. I got this.

I share the news with Krista and Gina, and they are appropriately overjoyed. Their happiness is contagious, and the wad of anxiety in my stomach unravels. I’m on it. I respond to the email to set dates. I let joy creep in.

This is what I want, and I’m so lucky.




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)

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.

Lucy, you got some explainin’ to do

July 25th, 2015

T minus eight days

In eight days I will go to Chicago to get started on a procedure to get a stem cell transplant for MS.

Here’s  how  the conversation goes.

Me: “So I’m going to Chicago to get a treatment for MS.”

Them: “You have MS?”

I wave the explanation away, because these aren’t the droids we’re looking for, “Yes, but I was diagnosed in 2001, and I keep it pretty close to the chest, and I’m mostly okay.”

The person opens her mouth to speak, but I interrupt. “But’s its okay, because these people in Chicago have found something that looks like a cure, they give you chemo to obliterate your immune system, then give you your stem cells back so you can grow a new immune system.”

The person usually doesn’t speak yet, but sometimes their mouth stays open.

“Like, when you are a baby…a brand new immune system… with no MS,” I say.

“Sooooo, is this a good thing?”

“Yes, I think so, and the only reason I’m saying anything is because, you know, I might need support. Plus, I’ll be bald, and people will find out anyway….Plus I was wondering if you could watch my cats.” (Or a variation – I’ll be away from work, I’ll need someone to fill in for me at the PTA, I won’t be at my kids team practice, I’ll miss bridge, I can’t go climbing.)

The person is usually slightly stupefied, and I can tell that I have more explaining to do.

It’s really hard to understand how you are supposed to feel. I get that. I’m confused too.

And, if it really is okay, why would I go have chemo?  I’ll tell you more about the later.

So now, instead of having to explain it to all of my friends and everyone I love, I will just start a blog.

Taaaa-daaaaaa. Here is a blog.

Step #1. How did I get here?

My lovely husband follows a number of feeds on Reddit, a news aggregation site. He read this article from JAMA: Association of nonmyeloablative hematopoietic stem cell transplantation with neurological disability in patients with relapsing-remitting multiple sclerosis.. He sent it to me, and I read it too. You don’t have to read it, but they found that 87% of the 47 people who received this treatment did not have disease progression and about half of them got better. This is very exciting news. I read through the paper and it all made good sense to me: this looks like a cure.

I know about clinical trials, but in case you don’t here’s how they work: Phase I, somebody has an idea and they want to test it. They write a protocol, get it approved by the powers that be (they are formidable), get it approved by an ethics board, and then they can test their question. This is how science works, and I love science. If things look promising in Phase I, they repeat, only this time they do it with larger numbers an in the exact population they are looking for. Usually with small numbers still, and small numbers are not usually believable yet. (Unless you’re not a scientist, then, apparently, you will believe anything.)

So this JAMA article, this was a non-randomized Phase II trial. (Hence the 47 people.) All this is to say, even though this looks like a cure, these guys have a long, long way to go to prove that this will work. (They HAVE to randomize – that means they take people and assign them randomly to either be treated or not treated. Without randomization, no scientist worth his salt will believe their results. They can produce miracles all day long, but without a randomized trial, their results could have bias, be confounding, or anything. In other words, they could be wrong.

Anyway, that evening, I was at a dinner party with climbing friends, and I told them about the JAMA article, and how in their Phase I Lancet article, the editors had actually used the words “proof” and “cure.” We talked about how the science made sense, and I said, “Yeah, I just wish I didn’t have to wait 5-10 years for the results of the Phase III trial to come out.” There was some general muttering, and we moved on to other things, like how giant our muscles are.

The next day I was meditating. (Doing Reiki, actually, which is like meditating.) I meditate sporadically, but I mean to do it every day. It always makes me a better human. When I do Reiki, it try to think of nothing, like I am lost in a white fog. It goes like this: Think of nothing, think of nothing…we need broccoli from the store…think of nothing, white fog, white fog…and onions….white fog, white fog…you could try to get into the Phase III trial.

What? I stopped meditating.


My cosmic friends would say that the universe spoke to me. Some would call it God.  My scientist friends would say I had an idea. But wait. I write about clinical trials all day long. Could I also be a patient?

I’m not a patient. I’m a scientist. Once a long time ago, my bike was stolen. When I reported it to the police, a patrol car pulled up and the policeman rolled down his window. I remember that he didn’t get out because it was raining, even though I was standing in the rain. “Are you the victim?”

“No?” I say.

“Who’s the victim?”

“Well, it was my bike, but I’m not a victim.”

The police man rolled up his window and filled out a form.

I’m not a victim or a patient. But should I do this? I happen to know because of my job that all clinical trials are listed on www.clinicaltrials.gov. It doesn’t hurt to look. I searched for the study, and sure enough, it was there and they were actively enrolling. If I was interested I could contact the enrollment nurse. The email is right there, underlined in blue.

I read the inclusion criteria. I had to have been on medication for at least 4 years with limited success (yes), I had to have had at lest two exacerbations in the past year for which I was treated for steroids (no), OR I had to have an enhancing lesion (a new lesion indicative of active disease on an MRI (unknown.)) I also had to have a disability score of between 3-6. Zero means you are fine. 10 means you are dead.

Want to have a fun time? Calculate your disability score.

I have a weak left side = 1

I have trouble walking after a little ways = 1

I have bowel and bladder problems = 1 or 2

I have memory problems. Maybe. I don’t remember.

I read the exclusion criteria. I’m the right age.

So here is step 1. I email the nurse. Can I be your patient?