Monday, May 10, 2010

Endless Vacation

I'm supposed to be making a decision right now, aren't I? Something about stem cells?

It really has been on my mind constantly, and at one point I had almost decided: the risk is minimal, the potential benefit is immeasurable, so it isn't a matter of if, but when, and if it's only a matter of when, isn't sooner better than later?

"If not now, when?"

But there's still a part of me that's afraid of the unknown. The unknown being, "Who's cells are these anyway? And does even it matter? Does it? Even a little??" I decided to conquer my fear of the unknown with knowledge. I decided to acquire this knowledge by going to Barnes and Noble and purchasing a copy of Stem Cells for Dummies.*

I've never liked any of the for Dummies books. I don't have a lot of time (energy) to spare so if I'm going to read a book it has to be not only informative but well-written and preferably enjoyable. That has not been my experience with any of the Dummies books. But after googling Google Books and scouring Amazon Listmania I came to the conclusion that this was probably my best bet. There just aren't many books about stem cells out there, at least not in the context I'm looking for. If you want to find a book about embryonic stem cells: ethics, morals, dreams, possibilities, then you have plenty to choose from. But adult stem cells, specifically "cord blood" stem cells, not so much.

I figure I should put some kind of deadline on my decision, like, a month from now, whenever now is. I haven't actually done that yet. June 10th?

So far I have only gotten through the first chapter of Stem Cells for Dummies. That was three days ago. I read it in study mode, pen and highlighter in hand, ready to reread what I didn't understand, to find the most important points.

So far, this is what I've taken to be the most important points:

1. It's funny there's this sudden big fuss! Stem cell research is hardly new!
2. However, we hardly understood anything about how stem cells work at all!
3. All stem cell treatments are highly EXPERIMENTAL and DANGEROUS
4. Beware of "patient testimonials" and "the placebo effect"

I put the book down after the first chapter and haven't returned to it because it made me really sad. It's making me "face reality", and it's depressing.

There's this whole delicate balancing of dichotomy one has to deal with when one is living with chronic illness: on the one hand, life sucks. On the other hand, you have to make the best of it. I worded it broadly like that so that healthy people can relate. The thing is though, I don't think they really can. When you are sick you can never forget the bad part for too long because no matter how long you can go walking around thinking positive and looking on the bright side there will come a day when you are in so much pain you can't get out of bed, you can't think, you can't read, you can't talk, you can't do anything to take your mind off the fact that you are really really sick and may never get better.

You could liken this problem to this article today in The Onion, imagining what it'd be like if the prolific political dissident Noam Chomsky tried to take his mind of things just for one day:

"Sources said Chomsky took what was supposed to be a refreshing drive in the countryside, only to find himself obsessing over the role petroleum plays in the economic and military policies that collude with multinational corporate powers."
"All right, all right," the noted critic and philosopher said, "I'm going back home, writing one—just one—reasoned, scathing essay, and getting it out of my system. But then I'm definitely going back to the park to walk around and just enjoy the nice weather. I'm serious."
"Because there's got to be more to life than the way that wage slavery strips the individual of his or her inherent dignity and personal integrity," Chomsky continued. "Right?"

For a while there I thought I should be miserable all the time. Anger, depression, sadness, they have a purpose - they motivate you to change. But eventually I realized I could be happy and accept my situation without losing the will to keep trying to change it. I've gotten pretty good at fooling myself into thinking my life is not so bad. After all, the world is full of misery, suffering...wage slavery. Why should I be an exception? All and all, life is ok.

But then here I am holding a book that might as well been called Stem Cells for the Desperate. I'm reminded I have a terrible disease and that yes, things are pretty bad. In gleefully thinking ahead to what I would do if I became a "functional cure", wondering which college I would go back to, what I'd major in, I'm forced to remember how sad I was, how much grief I went through, having to give these things up in the first place.

On the night I had the bad insomnia, before I wrote a blog, I wrote a lot of other things including a list of the happiest times of my life. There were no rules for the list except it could only consist of the first things that came to mind. I came up with twelve, paused, thought a little more, and ended up with twenty. Some were single days or events: an awesome road trip, the time in 7th grade I stayed home sick by myself and spent the entire day on the internet. (Sounds totally ordinary and even tedious now but at the time it felt like the biggest, guiltiest most wonderful indulgence of my life.) Most items are longer periods of time: freshman year in high school, freshman year in college, the six months I spent learning guitar, "all of childhood."

When it was done I realized they all fell into two main categories, times I was working really hard and times I was on some kind of "vacation." I also realized that they pretty much stopped after 2004, the last year I was well enough to work a full time job or complete a semester of college. This is what I frantically typed in my hypergraphic state:

Sadly there are no happy times after 2004, except a road trip or two. That’s six years of unhappiness. No offense to the people in my life at this time, it’s not you, it’s the disease. Fleeting moments like awesome concerts (Faint/Fever, Hives, Dandy Warhols, Momus, Divine Comedy, Phillip Glass, Terry Riley), good books (Middlesex, Pride and Prejudice, Strange and Norrell, Outliers...) discovering new favorite bands, listening to good music, the time ____ _____ kissed me on the cheek, don’t make it. Notice those are all passive experiences. They enrich real experiences, but can’t produce real happiness themselves. CFS makes you settle for a life of passive experiences.

Half of these are about working hard, half of them are about play, travel, vacation, relaxing, etc. With CFS you can’t do either. Also notice there is nothing to do with food there, even though I love new food, new restaurants, etc. But I don’t think back to when I used to come home from school and zone out in front of the tv and eat a box of goldfish crackers as a particularly happy time. So even though there’s been some things that you’d think would be on the list...World Cup Trip, Alaska Trip, learning IPA (I almost put that one), they just didn't make it because they occurred after 2004.

Work hard, play hard. I first heard that expression from my Dad my first year in high school. Now I can’t do either. Sleep hard, try hard, see no is hard. Everything in vain. Pain, insomnia, alienation. Denial. Not things that make humans happy. So what have been the happiest times these last five years? I could pick them out, but, they wouldn’t really be happy times, just “happiest” in bad times. I don’t think I’ll ever be happy again unless I can work, learn, and play. All I have now is tiny pieces of these old things. Except the internet, I can spend as much time as I want on the internet, but it’s not a treat anymore, is it?

I came to the conclusion that being unable to work or play, I was living in a kind of purgatory, and the only way I would ever know happiness again was to get healthy enough to work (or go to school) and the only way to do that was with stem cells.

And yet, I'm still not sure. For one thing, there's no guarantee that if I got the transfusion I would be healthy enough to go back to school. There's also no guarantee that even if I feel better enough to go to school for one year, even just part time, that I'd still be healthy the next year. It might wear off. I imagined a life where I was going to school part time in the spring and fall, and instead of spending my summers at internships or abroad, going down to Panama every summer for a reboot, for new DNA, and then spending three months regenerating in my cocoon so I could go back to school in the fall. At that rate, if I didn't do a double major or any extra electives, theoretically I could graduate in six years and it would only cost $60,000 + tuition. Hurray!

I still haven't totally let go though of the myth of stem cells as a magic bullet. Maybe I'd only need one transfusion and I could go back to school full time. Who knows. And if I believe that, then I also have to believe that if I don't rush right out and get them, it means I am afraid of life, that I don't want to go to school, that I don't want to get better.

I know that's nonsense, but, sometimes it's how I think. It's stories like this from Dr. Cheney that make me think this way: The only person who didn't feel any difference from the stem cells was a 56 year old lawyer who was working 60 hour weeks and felt terrible. He wanted to work 60 hour weeks and feel good. (He still had CFS, it's a wide-ranging disease.) When I heard that I did not think, "Whoa, that guy is a workaholic who's being way too risky and using stem cells like they're the fountain of youth." I thought, "Damn, this guy loves life way more than I do."

And then when I found out they were now doing intrathecal transfusions, (transfusions into the spinal column) he said there had been six so far just last week, but there were six people down there now, and when they heard how great the other six felt they all said they wanted intrathecal transfusions too! Who are these people? Don't they know about decision trees???

I can't even think about intrathecal transfusions right now. As I understand it, injections into the bloodstream are pretty safe, your body knows what to do. The brain on the other hand, is stupid. That's why when embryonic stem cells are transplanted in the brain they just multiply and multiply and you get tumors. Is it the same with adult cells? Is it the same when they go into the spinal column? I don't know, and I don't mind waiting a little longer to find out.

I'm always wary of being thought a malingerer. I assume everyone with CFS is. By 2006 I had started and dropped out of three consecutive semesters. However, I had never heard of CFS, I still had no abnormal test results and no other diagnosis than "depression." Also, I wasn't the only kid to ever take a semester off. I knew lots of people who had dropped out mid-semester or planned some time off to goof off or find themselves or whatever it is angsty, young, thoughtful people do. For awhile I thought I was one of them, but by 2006 I had realized there was something really wrong with me even if the doctors couldn't find it yet, that no one else was this tired. It took my friends and family a little longer to come to this realization though. There was one particularly painful instance, when my best friend, who had taken some semesters off herself, but was now pushing through to finish and get her degree, essentially told me that I'd been on vacation long enough, and it was time "to stop fucking around and grow up." Is that what she thought I'd been doing all this time? I told her, rather meekly, that I didn't think of this as "time off", that I thought of it as "sick time." She just rolled her eyes and it was the end of the conversation.

I think it's in Stricken, can't find the exact quote: a teenage boy who gets ME/CFS and is out of school for the whole year. His friends think it must awesome to stay home from school and play video games all the time. "Yeah it's nice, for a month, but not for nine." After nine months, even if he isn't anxious to go back to math class and homework, he at least must be aching to ride his bike around the neighborhood. And then the longer you're sick, the sicker you get...

To anyone who thinks CFS is an endless vacation, I would invite them to think so in the context of the Ramone's song, Endless Vacation. You only need to listen to the first few seconds to get the picture.

*This is not meant to be a review of Stem Cells for Dummies, like I said, I've only read the first chapter and skimmed through the rest. Even though I am disappointed that there just isn't enough of the kind of research I was looking for out there, so far, I actually think this is a really well written and informative book, despite not mentioning Chronic Fatigue Syndrome once in it's 360 pages, like everything else I've read about stem cells.


  1. Alison, I'm so sorry about your illness, and even more sorry that Dr. Goldstein and I couldn't support your dreams of a stem cell-based cure in the book. Unfortunately, the science just doesn't support it yet. And I'm particularly leery of overseas clinics that make fantastic promises without the science to back it up.

    I suggest looking into clinical trials. You can help the research progress and be assured that the people administering the trial will watch out for your safety at the same time.

    Best wishes,
    Meg Schneider
    Coauthor, Stem Cells For Dummies

  2. Meg,

    I hope I didn't give the impression this was any kind of book review. It was more just an impression of how overwhelmed I am. Like I said, I only read the first chapter and just skimmed the rest. Actually I thought, at least so far, that the book is really well written and probably the best book out there for what I'm looking for. I was just disappointed that, like you said, there isn't enough science to support stem cell based cures.

    Thanks for your suggestions to look into clinical trials. However, my doctor informs me that since clinical trials with stem cells are so expensive and have to be approved by the FDA, it would be a very long time before there were any clinical trials approved for Chronic Fatigue Syndrome. In fact he said it would probably be the last disease that was approved.

    Thanks for your comment. I've added a little asterisk at the end to try and clear up the impression this isn't a good book. I actually think it is very well written and helpful, it's just been hard for me to get through it for emotional reasons.


  3. great post alison. i'm trying to decide on stem cell treatment too. you have one more positive going for you on your decision tree...under 30. i'm over 40 so the chances of them working are even's a tough decision for so many reasons.

    meg, i know of many cfid's patients who would love to enroll in a clinical trial of stem cell treatment. are there any being conducted? otherwise it's out of country and 10's of 1000's of dollars for us for now.

    take care, lisa

  4. Alison,
    great post. Music has given me a boost a few times too. A Cold Play concert last year and a Jonsi show just last week really hit the spot. No cure, but it's good for the endorphins every now and then. Agreed on the passive nature of the experience though.
    Thanks for writing.

  5. Hi all,

    I did a search on for CFS and stem cells, and there is one trial that's recruiting for patients. Unfortunately, the only two stem cell treatments that are proven to be both safe and effective are bone marrow transplants and skin grafts (and skin grafts only work permanently when the skin is taken from the same patient it's used to treat). I don't know whether a bone marrow transplant makes sense as a treatment for CFS because I simply don't know enough about the illness. And, unfortunately, that's why we didn't mention it in the book -- there's just not enough research yet on stem cells and CFD.

    Alison, I didn't take your post as a slight of the book at all; I am genuinely sorry that the science isn't there yet to help you and others in your situation. My main reason for replying for your post was to warn you against overseas clinics -- all too often, these clinics take your money and give you nothing but shattered hopes (and sometimes an even worse health status) in return. 60 Minutes recently did an expose on one of these alleged stem cell clinics in Mexico. Please, please, please, do not rush into your decision. The risks can be far greater than you know.

    My best to all,

  6. "But eventually I realized I could be happy and accept my situation without losing the will to keep trying to change it. "

    This is exactly where I am now. Its taken nearly 5 years but I feel like I've finally accepted the fact that I'm sick! I read something recently "When the Atlantic waves are rolling towards us they will drown us if we just weakly let ourselves sink under them - that's resignation. But acceptance is a strong act of the will, it means flinging ourselves on to the crest of the wave and allowing it to carry us into the shore."

    But of course that's easier said than done! I'm constantly struggling between accepting the situation and fighting to change it. Reading up on the science, questioning my doctor, eating a strict diet, reading up on nutrition, looking for a treatment, searching for a cure. (And all with a fuzzy brain that won't understand things properly!) Its stressful and heartbreaking. And then I remind myself of acceptance and I stop struggling for a moment. But the thing is I can accept being sick right now but I can't accept being sick forever.

    Your description of this illness as being in purgatory is so accurate. I've described it as my life being on pause. My life stopped when I was 23 and now I just watch my friends move on with their lives - getting jobs, moving, having relationships, going on holiday - while I'm trapped in a skeleton life where nothing changes. An where people begin to forget about you and you become more and more invisible. I just wish someone would press play and I could go back to living.

    I haven't looked into stem cell therapy, although I've read a little about it in some forums and blogs. Its not an option for me at the moment but I can imagine a little how difficult this decision must be for you. Good luck with it! x

  7. My doc is pushing stem cells, too.... when pressed, he admitted the clinic in central america will tell you they don't know what might happen to you down the line after stem cell therapy. scarey to hear him admit that. it's a tough decision and i wish you all the best with whatever you decide.

  8. Thanks for the comments everyone.

    Lisa- Good luck with your decision as well. I wonder about clinical trials too...

    Meg - You said you found one? I looked on too but couldn't find it.

    Anon- Who is your doc if I may ask?

  9. Alison, I swear you are my favorite writer about CFS on the Internet. You take everything I want to say but for some reason can't get out and put it in the most poignant way.

    These are the kind of posts I want to print out and give to my family.


  10. Allison (sp?) I'm new here. Forget how I found you but glad I did. I can sense how overwhelmed you are. I was overwhelmed thinking and reading about your decision. I have often wondered if I were given the chance to do this with Dr. Cheney (who I adore) would I? The truth is, I just don't know. I, too, wonder about putting something in my body from somewhere else.

    I love the way you are processing it. That's great. One of the things I have learned is that if I don't have peace in my gut about something, it usually means, at least for the time, it isn't for me.

    I hope you find your 'peaceful' answer.

  11. Annie thanks so much! Please feel free to print out whatever you wish :)

    Dominique - Thanks for your thoughts. I don't think I'll be able to decide anything until it does feel right in my gut, which will probably take time.