What have I told the kids?
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.
Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (12)A Haunting
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:
- 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.
- 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.
- 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.
Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (9)Chicago and the Honeymooner Ladders
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.
Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (16)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)