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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.
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?
test Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (21)21 Responses to “Lucy, you got some explainin’ to do”
Go, K-Ron, go!
This is great. You are brave and beautiful, and smart to do this.
Wow. Thanks for the update, the insight into your thought process, and the nice analysis of things that have to be considered concerning clinical trials. No one is more qualified than you to make this decision. All I know is, one thing that does not need a transplant is your mad writing skills. Go forth, kick ass, and please keep blogging.
From Michigan with love- Scott
You Rock!
I’m hooked, I can’t wait to hear what happens next…
You go woman. XO
Wow Karen, Your blog makes me weap because of your beautiful truth telling through wonderful humor. I know you are strong. You are my sister, and if anyone has the gumption to go and take Life by the horns and heal themselves, it’s YOU! I love you! I see you bright and beautiful and whole as you are. I see you listening to your inner wisdom and absolutely healing! I know in our humanness we can only be so brave, so take it one day at a time, and you will succeed. Love, Laura
So glad you’re writing this. We will be following from the West Coast-
Thanks for doing this K! Will love to know what’s happening while you’re in Chicago. Xoxo
You will look nice bald. You ARE nice. I hope you feel better than nice after all this.
Also, this blog is awesome.
You are awesome!!! I know our friendship is quite green and narrow minded but I have really enjoyed getting know you in our little increments of time together. I wish you the very best girl!! and I love your writing style!! I will be checking in often for updates.
I’ll be reading and sending good vibes your way (and anything else you might need – just ask). You rock!
Go Karen!
Don’t worry about being bald. You might recall that it was a key attraction when Chris first met you …
Love, tears, some laughing.
I hope/envision both the positive direction of the treatment and perhaps the published memoir this blog may become. Go Karen. Love
Love this blog! Ok, I’m here so let me know when I can come see you and Chris. I can handle throw up. Press on, k-Ron!!
It takes a lot of guts (not what you need fixing here) to “be” the proof. Regardless of the outcome (our mantra: “it’s gonna be all good, it’s gonna be all good”), there are gonna be a lot of MS’d people out there who are gonna owe you. Take the karma and drive.
You da Woman. Good luck.
You were so cute when you were bald the first time! So cute, you even tried to make me bald when I just needed a little touch up. You little devil, you. Love you.
This is gonna be tough…but you are so much tougher. And being bald is bad ass but you already know that. You’ll be the Bravest Bald-Ass Bloggess.
I am so glad you are sharing. You will be a beacon for the millions who follow. I and countless others love you so much.
We’re following along/catching up starting today. We’re also rooting for you, and so appreciating your letting folks in like you are. Oh, and I’m dead serious when I say I think your going to be frustratingly adorable bald. Hot sauce.
Love you.
I’m starting to follow alom/catch up on your blog today. Currently stuck on a plane, but if you can, imagine me smirking and thinking, she’s going to be so cute bald. I’m so happy to be hearing your voice here, amazing lady. Thanks for sharing this. Love you.
You give me hope…I have it too.