Wisdom from books

When I had a few minutes in between things at the conference I was at this past weekend, I tried to fit some fun reading in. So I was reading a non-fiction book about cancer (I'm a dork, this is proof) that was really fascinating, and I came across a passage that really struck me.

First, a bit of background.

Cancer drugs typically kill a fixed percentage of cancer cells.  To make the math easier, let's just make it 90%.  If your initial tumor had 1000 cells in it (most tumors are much, much bigger, but again, the math is easier this way), after one chemo treatment, you would be left with 100 cells.  Another round, 10 cells.  Yet another round, 1 cell.  Finally, a fourth round to obliterate that last bit of cancer.  It takes the same amount of drug in each round.

Doctors use hormone markers to monitor treatment progress in some cancers. As the tumor shrinks, so does the amount of hormone in the blood.  Back in the 1960s, scientists worked to reduce those hormone levels, but they never pushed to eliminate them entirely.  Either they didn't think it was possible, or they didn't think it was that important.  When one doctor did continue dosing his patient with toxic drugs to remove all traces of hormone, he was sacked from his job.

This brings me to the passage I want to quote:

But the story had a final plot twist. As Li had predicted, with several additional doses of methotrexate, the hormone level that he had so compulsively trailed did finally vanish to zero. His patients finished their additional cycles of chemotherapy. Then, slowly, a pattern began to emerge. While the patients who had stopped the drug early inevitably relapsed with cancer, the patients treated on Li's protocol remained free of disease--even months after the methotrexate had been stopped.

Li had stumbled on a deep and fundamental principle of onvology: cancer needed to be systematically treated long after every visible sign of it had vanished. The hcg level--the hormone secreted by choriocarcinoma--had turned out to be its real fingerprint, its marker. In the decades that followed, trial after trial would prove this principle. But in 1960, oncology was not yet ready for this proposal. Not until several years later did it strike the board that had fired Li so hastily that the patients he had treated with the prolonged maintenance strategy would never relapse. This strategy--which cost Min Chiu Li his job--resulted in the first chemotherapeutic cure of cancer in adults.

{emphasis mine}

I'm pretty sure most readers wouldn't have been struck by the parallels to eating disorders, but I was.  Most people think that once all visible signs of the eating disorder are resolved (weight is normalized, binge eating and purging have stopped, etc) then you can stop treatment.  The eating disorder is gone, right?  You can't see it any longer.  How can it be there?

But if the thoughts and urges are still there, if the fears and compulsions are still there, then the eating disorder is not gone.  You have to keep chipping away until everything gets down to zero.  That's how you get to full remission--not by stopping at "good enough" and "almost back to normal."  True, it's not possible for all cancers, and it isn't yet possible for all eating disorders, nor can we say for certain that someone with an ED will never relapse, but that's no reason not to try.

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PJ said...

No, I was right there with you on the parallels to ED! It is like a cancer that has incidiously infiltrated my brain.
When treated it shrinks. When ignored it grows exponentially.
I think you are so right about not ignoring it just because symptoms appear to have been resolved. A dormant ED is very different to recovery.

hm said...

My RD says that after full weight restoration, she likes to keep people around for at least a year- until they're wondering, why the hell am I still here? So this makes total sense to me.

Of course, there are those cancers that cannot be obliterated- like the one my sister has- chronic myeloid leukemia- the most they can do is keep it at bay with chemo drugs. She'll never be at zero. She'll be on these drugs for the rest of her life, and when her body decides eventually to reject the drugs (which it will do- it's just a matter of when) then the cancer will take over and she will die from it. I'm pretty sure my ed reflects this point of reference more than a cancerous tumor. I'm pretty sure it's in my blood, my bones, my brain- and the most I'll ever be able to do is keep it at bay.

Damn, I sound like a debbie downer. Oh well- those are my thoughts!

bittersweetwonders said...

Thank you! I've been weight restored and less compulsive fora while now, but up until a few weeks ago, was still really struggling. Needless to say, I felt like a mess still asking for help despite looking fine. And also so concerned that this was going to be the best that it got. Thank you for normalizing my situation (that I'm sure many other people have had!). I've really enjoyed reading your blog for (what, a year now?). Thank you.

Anonymous said...

So needed to hear that today! Thanks for sharing.

Jessie said...

You're so right. An eating disorder is exactly like cancer. It's sneaky, makes you feel like sh*t, and deadly. But if it goes undiscovered, it will continue to grow until it consumes you. And if it's treated, well, sometimes it works and sometimes it doesn't. But just because it doesn't always work doesn't mean the doctors are going to stop trying, and neaither should we.
You're doing so well Carrie, I know someday you'll be able to say "I have recovered from my eating disorder."

Abby said...

Great post. I still struggle a lot even after being a normal weight for quite a while now and I think it may have something to do with having stopped treatment once my weight was steady.

Jo said...

i wish my treatment team had thought of this concept before discharging me! As soon as I got to my ideal body weight they gave my therapy time slot to a " sicker" patient, leaving my with only monthly gp appointments to check my weight. Although I have managed to keep my weight within a few pounds of my IBW I think that I would reach full recovery much quicker if I could still receive some ED therapy. Even though I now appear recovered it would be nice to have someone to talk with about any issues that arise...

Anonymous said...

What do you believe is the necessary treatment to get from no outwardly visible ED signs to full recovery? Continued weight gain beyond the initial restoration? Individual therapy? Strict food guidelines? Medication? Nutrition therapy?

Jen said...

So, Carrie, we seem to be reading the same books...... I heard about the Emperor of All Maladies on NPR. Have you read all of Abraham Verghese's books yet?
I'm in the middle of Bitter Pills: Inside the Hazardous World of Legal Drugs by Stephen Fried.

Jen said...

Oh, and I just took time out to talk about these books, too!

Carrie Arnold said...


I think therapies like CBT, DBT, ACT (insert favorite acronym here) are really helpful for dealing with residual ED stuff. It's probably going to vary with what, exactly, you still need help with.

Laura (Collins) Lyster-Mensh said...

I cannot thank you enough for this post. As always, you nailed it. If we could get people to understand this we could make such progress.

Jess said...

This is SO TRUE! Just when you think your on the right track, Ed starts creeping up again! So annoying, irritating and unmotivating. However, we have to continue to fight for what we want and what we deserve-a healthy and loving body that is set free from this self destructive diease!!! Thank you for sharing. Your blog is great!

Rod McClymont said...

Thanks Carrie, thought provoking and obviously rings a bell for others posting.

Charlotte UK said...


A magnificent post and, as you know, SO relevant for me as far the cancer thing goes. I am looking forward to impressing the oncologist with my knowledge.

Keep on keeping on, my friend.

Julie O'Toole MD, MPH said...

Carrie, great post and very apt.

I plan on "pointing" to your blog so that physicians, insurance companies and --yes--parents can understand this critical point.

Unknown said...

Thank you for posting that! Sometimes I feel like i'm just lost or alone. I'm putting on a show that i'm normal, and others think i'm totally fine again because i look normal again. But really i'm struggling with ED inside of me. But your post just clears things up and not making me feel like such a failure that it's not completely gone yet. so thank you.

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About Me

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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