Sunday, April 18, 2010

Stem Cells, Literature

Tomorrow morning my parents and I drive to Asheville. The next morning we'll meet with Dr. Cheney.

It will be my second appointment. I decided I wanted to see him a year ago when he announced that he'd given some of his patients stem cell transfusions and the results were good. At the time he was only using stem cells with older patients, but I thought it was time to see him anyway.

And by the time I did see him six months later, he'd changed his mind about just older patients getting transfusions. “The problem with the young, they have more to lose but they also have more to gain. Because it makes a difference getting your life back at 25,” he said.

At the time I was 25, now I'm 26. At the time I wasn't sure if I wanted to risk a stem cell transfusion. Last time when I left he said "Who knows, maybe in six months we'll be sending you off to Panama!" and I thought he was being a little hasty, but now it's all I can think about.

Driving home then, my mom said it wasn't worth the risk, and that really hurt me. Not worth the risk? How dare she imply that I had a quality of life, that my life was anything other than unbearable. I couldn't go to school, I couldn't work, I didn't have the energy to take any kind of meaningful action. Why couldn't she see that I had nothing to lose?

Now though I'm a little less extreme and a little more realistic. I don't have much, but I do actually have something to lose. Things are terrible, but they could certainly get worse.

A few weeks ago I was reading Michael J. Fox's book Always Looking Up: The Adventures of an Incurable Optimist. Ghostwritten celebrity autobiography isn't my usual cup of tea but I picked it up from the display table at Borders on an impulse. I thought I could use a dose of optimism from a fellow Incurable. This was last year, I read the first few chapters, got bored, put it away. But a few weeks ago I picked it up again when I was looking for something light to read. I was treated to a quick political history of the early 2000's stem cell debates from his point of view. All the research I'd been doing about stem cells, and I'd completely forgotten that they were being debated all over the news when I was in high school. The part I'm thinking of now doesn't have anything to do with stem cells though, it's about choices.

He talks about his sister, Karen, who has decided to undergo an experimental brain surgery for her severe epilepsy. The family was not as sure about her decision as she was.

My youngest sister, Kelli, later recounted the conversation she’d had when Karen told her the news of her plans.

“Are you sure you want to do this?” Kelli asked. “What if it makes things worse?”

“It can’t get any worse,” Karen replied.

“But still, isn’t the devil you know better than the devil you don’t?”

Typical of Karen, her response was terse and matter of fact.

“You don’t know my devil.”

I wasn't familiar with that expression, "The Devil you know..." but it resonated with me.

The sister had the surgery, and it worked. She spent the next 15 years free of seizures and meds. But then she had a massive brain hemorrhage at the age of 57 and died.

I assumed there was no way to know what the chances were that she still would have had the hemorrhage if she'd never had the surgery, but that's not the point. I don't know what the point is.

A friend of mine from high school is getting her PhD in biomedical engineering, so I thought I'd talk about my decision with her. She said the first question I should ask my doctor is, "What is the risk of cancer?" I could ask him, but I think I have a pretty good idea what the answer is. "We don't know." It's too soon to tell.

I know he thinks it's safe though, that's his opinion. But it's not Nancy Klimas's opinion, who's told her patients not to get stem cell transfusions until more is known about XMRV. I tested positive for XMRV. XMRV definitely means a higher risk of cancer anyway. And then there's this scary quote from Hilary Johnson:

"Why not study something about the disease that is actually quantifiable? Why not investigate why gray matter atrophies and blood perfusion in the brain is remarkably reduced? Or why spinal fluid has protein in it? Or why so many people with this disease get lymphoma? Or have virulent, active HHV6 and HHV6-A infections? Or have severe Natural Killer cell deficiencies? Or are dying in their 40s and 50s?"

Dying in their 40's and 50's. I keep hearing that in my head when I think about this decision. Maybe I'm not so young after all. My life could be half over.

Sometimes it seems like an easy choice, that I should just go for it. Dr. Cheney makes it sound so easy. Just fly down to Panama, see the canal...
"Four days later you're finished, 50 million cells, go home" "One of the interesting things...they sleep for 30 days..." "To me it's almost like they're being reborn" "They say this is wonderful sleep." "Wesley, he slept for about 30 days, then he just got up and went back to school."
Wesley is his stepson by the way, who's case Dr. Cheney kept comparing to mine.

When I told my uncle about it he said it sounded great. "I would love to sleep for 30 days and be reborn." And my friend seems to think I should go for it too. The fact the cells are injected into the blood stream and not into the brain is a good thing. So is the fact that they are adult and not embryonic stem cells. She said that made her feel better.

My gut feeling is that it's safe. But I'm still afraid. It's still experimental. It's still a risk.

So I have been thinking about it a lot but I have not made any decisions yet. I don't know if I'll be ready to decide on Tuesday, or even this month.

I never, ever thought I'd have to be making an important decision like this at such a young age.

In a story, a character is not defined by their age, accent, hobbies, or use of an ear trumpet. That's characterization. How do you show one's character? By the decisions they make.

When I really think about it, I've never made a big, character defining decision. My character has only been hinted at. Sure I've made choices, to move to LA, to go to college in Syracuse, to leave Syracuse and transfer to USC. Trips to take, apartments to rent. But none of those were really bold choices, I kind of fell into or was pushed into all of them, mostly by CFS. If I never got CFS, the biggest decisions I'd ever have made at this point would be where to go to college (there was no if), what to major in, whether or not to go to grad school, and eventually, whether or not to get married and to whom, whether or not to have children. Important, life-altering, but overall, common, ordinary decisions everyone makes and knows that they will have to make.

This is a complicated decision. I could never get into all that I've thought about it here. But actually I kind of already feel like the choice is obvious, that I should just do it. Take the chance, maybe even wholly and finally end this illness that has defined my character for the last ten years.

But I keep thinking about Joachim. Jim and I recently finished reading The Magic Mountain. Jaochim is the main character's cousin. The good soldier. Everyone who comes to the sanatorium (on the mountain) ends up staying longer than they expected. The head doctor keeps saying they need more time to heal. Another six months, another year...then you can go. Most of the characters take this in stride, or embrace it. What's six months? What's a year? That's nothing! But not Jaochim, who is eager to get back to the flatlands and do his duty. Finally he goes, without the doctors permission. He gets to leave the sanatorium and rejoin life, rejoin his regiment. But only for a year. Then his tuberculosis overtakes him and he has no choice but to come back. He over exerted himself, and he dies shortly after his return.

Jaochim could have lived longer on the mountain, but it wouldn't have been the life he wanted. Not that he saw it that way, that's my personal, 21st century American self-centered young person interpretation of it. For him, it is a matter of duty, as a soldier, as a human being. A human being's duty to live, to work, to do something.

Today I was reading Eeeee Eee Eeee by Tao Lin. This quote stuck with me:

Schopenhauer had said that -- that life was to be perceived not as a book you would write but as a book already written, something to be gotten through, so as to detach oneself from suffering, which was an outside thing, really; not actually in the text. Everything was to be accepted.

Tao Lin is a 27 year old hipster, 24 when he wrote this book. This way of thinking appealed to the 24 year old hipster in me too, someone who gets shuffled from high school to college to the job market...and the closest way you have to making your life resemble a novel is to add irony at every occasion. Lin is aware of this too:

"Irony is so privileged," Mark said. "it's what happens when you don't need to do anything to survive--it's when the things you do have nothing to do with survival and you spend forty million dollars to make Steve Zissou and the Atomic Submarine or whatever it's called."

Life is not a novel. You are not the author. It makes sense, until you find yourself at a young age in the surreal position of making a choice that could change your life in a huge way. Then what?

Agh. I shouldn't have asked that question. I don't want to answer it.


  1. A difficult choice, and I can understand your struggle. I don't know enough about stem cells to help you in your decision (I'm too sick to make the trip so it's not an option for me), but I know how hard it is to decide on an experimental treatment. There are so many "what if"'s and it can be impossible to know which path will lead to the best outcome. But when you do make your decision, trust that it's the right one.

    You are a gifted writer, by the way. I enjoy reading your blog.

  2. Alison, you really are a fantastic writer. I don't know enough about stem cells either to promote this choice, but I know the devil you are fighting. My life rarely involves anything bigger than moving from the couch to the bed, and sometimes I wonder if it is a life at all. Tis better to keep fighting than give in though.

    I hope you find the answer you are looking for.


  3. It's just not fair that you have to make this decision at 26. I agree it's a tough one. I'm in the midst of making it myself.

    I'm trying to do some research on the chances of developing cancer with stem cells. I'll keep you posted if I find anything solid.

    Great post. I agree with what Annie and Laurel said. You are a great writer.

  4. (just discovered your blog)

    i'm one who's inclined to wait and see, even with XMRV testing - not available here yet anyway - and treatment, which my gut tells me is the cause...yet, as you say how much is there to lose? do i just stay grateful that i'm no longer bedridden, on morphine and still screaming in agony. or do i try anything, anything that could give me a chance at something vaguely resembling a life? in a way i'm grateful lots of these things aren't even options for me, here and now.

    such a huge huge decision for you and i send you thoughts and blessings as you make it. we all have to believe there will be better days...