First visit to Chicago

T minus 7 days.

The nurse emails me back – she doesn’t know if I am a good candidate. If I have an enhancing lesion on a recent MRI, then it’s a go. Do I have a recent MRI?

“No. I haven’t had one in years. It costs me $700 to find out that I still have MS.”

Turns out, I can do one here in Raleigh – but if I am a candidate, I’ll have to repeat it in Chicago. they have space on March 16.

So now, I have another decision to make. I figure that the chances that they will find an enhancing lesion are slim. I give myself a 25% chance, apropos of nothing but my own gut. Then, is it worth the expense to travel all the way to Chicago and have an MRI done? There is an added bonus that they will meet me. I think that maybe if they meet me, I’ll stand a better chance of making it in. I don’t know why I think this. I spend about four hours agonizing; this decision makes me sad.

My MS has made me sad for a long time now. I hide it well. Doing this will make me vulnerable. It will mean that, yes, things are bad enough that I am considering chemo. I talk to Chris about it. He thinks I’m right, that I have a better chance if I go in person, so I go. I arrange to say with my friend, Heather, who lives in Racine while I’m there. I don’t ask Chris to go. I’m a big girl. I got this.

I feel very efficient and responsible taking the train from Midway airport to Northwestern. See – I’m a grown up. I can do this all by myself. The schedule is fly in Monday for MRI, meet with Dr. B on Tuesday, meet with Dr. Burt on Wednesday, and fly home Wednesday night. I find the place where I am to get my MRI, put on a hospital gown, and stay perfectly still for almost 3 hours in the MRI machine with one break. I’m not sure what to wish for – do I wish for my disease to be active – to be getting worse right this second so that I can get into this trial? Yes. Amidst all all the noise of the MRI machine, I send a small hope bubble into to air. I wish for a small enhancing lesion to appear.

At the end, I call Heather and tell her I’ll take the train as far north as I can so she has less driving to do. I secretly wish for company as I work to find the train.

She meets me; she’s happy to see me and has brought travel wine for the drive. I’m happy to see her, but I’m also anxious.

In the morning she goes with me to see Dr. B. He asks about my symptoms and I tell him about my weak left side. Is that all? I tell him about the deadly embarrassing bladder and bowel issues, but tell him that it’s okay. They’re mild. Is that all? I tell him about the typos, the mixing up words, the trouble remembering things sometimes. But it’s all very mild. He’s very kind, and he leaves to look at my MRI results.

When he comes back, he seems agitated. He tells me that women do this; they belittle their symptoms, but that I should take myself more seriously. He turns away 80 people a day for weakness in their leg. “Weakness in your leg, no big deal, you get a cane.”

I’m trying to keep my face together. All the muscles in my face are contorting so that I won’t cry.

“But your cervical spine lights up like a Christmas tree. You, my dear, are head for disaster. Dementia, diapers, a wheel chair. ”

I look sideways at Heather. She looks like she’s been slapped. I stare straight ahead and ask. “Did you see an enhancing lesion?”

“Maybe. I’m not sure.”

“So what happens next?” I feel like if I don’t hold perfectly still, my face will melt off.

“You see Dr. Burt tomorrow. He’ll look at you, we’ll talk, and we’ll make a decision.”

He can tell I’m upset, and he touches my knee. “Take yourself seriously tomorrow.”

I make it all the way down the elevator before I let myself cry. Then I am sobbing. Heather is crying too, and she hugs me. “C’mon,” she whispers. “Let’s go get drunk.”

 

 This is us, midway through that process.

 

Filed under Stem cell transplant for MS | Comments (5)

Lucy, you got some explainin’ to do

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.

What?

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?

Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (21)