Tuesday, January 09, 2007

It's My Cancer and I'll Flip If I Want To

I can't believe this: I'm hungry again. Not just bored hungry, not just a little case of the munchies hungry, but serious, stomach rumbling, light headed, blood glucose plummeting HUNGRY. Again. Hell, I just ate.

I try to eat a healthy, balanced, protein rich meal approximately every two hours while I'm awake, and yet I always seem to be starving. Even when I'm in the throes of the Big Ick, even when I'm riddled with mouth sores and throwing up every fifteen minutes, I'm hungry. It's a lot like pregnancy, where my body is convinced that the nausea would go away if only I could satisfy some grotesquely weird craving, the proverbial pickles-and-ice-cream thing.

So I'm frequently cursed with a rabid craving for exceedingly unfortunate combinations, nasty things like greasy take-out andouille fried rice from the Asian Cajun Drive-Thru served with sardines and Tang. (Yeesh, just reading that sentence would probably drive poor Alice Waters to commit seppuku.) Kowtowing to a bizarre craving works for about ten minutes, after which the nausea resumes full force and I can never bear to look at or even think about those hideous ingredients again for the rest of eternity.

But none of that stops me from being stark raving, foaming at the mouth HUNGRY. All the fricking time.

As many of you have probably guessed by now, this is the Prednisone talking. I take 100 mg of Prednisone, a synthetic corticosteroid, for the first five days of every three week chemotherapy cycle. I take it for its anti-inflammatory and tumor shrinking benefits, but I also get saddled with a shitload of its nasty side effects, including but not limited to: immunosuppression, slow healing, catabolism, fatigue, severe insomnia, depression, indigestion, edema, aching joints, muscle pains, restless legs, facial swelling, and, yes! a dramatic increase in appetite.

Facial swelling: the typical goofy Prednisone moon face. (Falling off the fashion grid is also, apparently, a lesser-known side effect.)

Although most folks associate cancer with skeletal weight loss and wasting away, it's not uncommon for cancer patients taking Prednisone and/or hormonal treatments during first-line chemotherapy to rapidly gain a huge amount of unwanted weight. I've read on various lymphoma support boards about people who gained fifty unwanted pounds or more during four months of chemo. Many breast cancer patients have it even worse. This kind of weight increase results not only from adding body fat, but is exacerbated by the loss of lean muscle caused by catabolic drugs (i.e., Prednisone) and extensive inactivity.

Recent medical evidence indicates that even moderate weight gain may be associated with an increase in relapse and cancer-related deaths:

Women who gained only a moderate amount--on average about six pounds--were 35 percent more likely to die from cancer than those who maintained their weight. Women who gained larger amounts, averaging about 17 pounds, were 64 percent more likely to die from cancer.

So there's this uncomfortable dilemma: gaining weight may kill you, but the drugs that are supposed to be saving you do their damnedest to force you to eat yourself to death by packing on excess adipose tissue, which stores excessive toxins from the chemo and so forth. It's an ongoing struggle.

Ok. I'm well aware that the whole topic of weight is a touchy and reactive subject for many people. Let me make it clear that my first priority is and has long been optimal nutrition for good health, not being fashionably thin. My motto is: "I don't want to be skinny; I want to be strong."

Now with that in mind let me tell you a story. Before I had cancer, back in the days when I was a dedicated athlete, I used to frequent an online fitness nutrition and weight lifting board. I learned a lot there because the extremely knowledgeable owner of the board demanded rigorous peer-reviewed scientific studies backing every claim. Unlike the majority of the bodybuilding and fitness boards out there, it wasn't all about anabolic drugs, and there was no tolerance for silly woo, blind tradition, superstition, spam, or bullshit product shilling. It was about achieving excellence in fitness and athleticism through sound knowledge of physiology, kinesthetics, molecular biology, and other relevant branches of evidence.

Granted, there was a pervasive amount of adolescent macho posturing, sexism, racism, and porn worship. But I managed to minimize these blights by sticking to the brainy scientific forums (my favorite was called "the Nerd Shit Forum") and reading a few favorite training logs. In addition to the muscle building and nutritional knowledge I gleaned, I developed some real enduring friendships on that board.

So when I was diagnosed with cancer, I started a new training log over there as a way to keep track of changes in my body composition during treatment. I was especially concerned about monitoring muscle loss, but also wanted to keep track of any changes in weight, up or down. This log was also a place to hang out with my old weight lifting buddies, and some new friends jumped aboard, and all in all it was a great source of support for me in those horrible, lonely, frightening early days of my illness (as opposed to these horrible lonely frightening middle days of my illness).

One day my friend Kimberli posted a pointer to another board where a woman who had just finished treatment for lymphoma was keeping a log. This woman had gained 50 pounds, and was now documenting the months she spent dieting, exercising, and taking some dubious (imho) supplements in her successful effort to shed the unwanted chemo weight.

After reading about her travails, I commented on my own log:

I got the fear of the Bejeebuz reading that she gained 50 pounds. Gah. But from what I've read on the lymphoma boards, this is not at all unusual, mainly because of the Prednisone. Combined with inactivity, a deep need for any scrap of comfort, and ignorant doctors who say eat calorie dense foods to keep up your strength.

And before long the following comment appeared in my training log from the owner of the board. Now bear in mind, this is a very intelligent man, an accomplished middle-aged adult, a well-known expert in the field of fitness and nutrition, the author of at least five scientifically based books about crash dieting, rapid fat loss, and how to achieve "super leanness." He said to me:

Ok, since apparently everyone is too busy telling you how gret you're doing you need a serious fucking reality check.

Do you realize what the disease is that you have?

It is a stone cold killer

and yo'ure worried about gaining weight?

are you fucking stupid?
no, we all know yo'ure not stupid.

your body is trying to fight against chemo and the disease and you're being a retard about not wanting to eat enough

don't worry, being dead will keep you skinny

Charming, no? I politely told him to back the fuck off, that I wasn't trying to starve myself or lose weight, that I didn't have an appetite problem because of the Prednisone, and that my doctors, who were NOT ignorant, had advised me to eat a balanced nutritious diet and to maintain my weight. There is scientific backing for this advice. Someone else said that perhaps he'd misunderstood my goals, and a few others chimed in, and blah blah blah. But something about cancer had triggered his ire, and the board owner was on a roll. He went on:

Who the fuck said anything about body recomp?

She's afraid of weight gain because thoes 'ignorant doctors' (you know, the ones trying to save her life) think she should be eating calorie dense foods. Dam straight given that appetite is a problem and cancer tends to cause tissue wasting (called cachexia). Lose too much LBM and you DIE. And what prevents that? Eating food. And when appetite is fucked, what do you do: you eat calorie dense foods. Which is what it sounds like the 'ignorant doctors' told her.

But hey, maybe she can stick with the CR regimen and truly starve herself to death

I mean, it worked to well for her to this point.

she's worried about weight gain and keeps trying to maintain her exercise routine in the face of cancer

she's in denial is what she is

but you guys feel free to keep encouraging this crap

A minor flamewar ensued, with some friends jumping on my bandwagon and some of his lackeys jumping on his. I finally ended up leaving the board altogether, because you know? Life is just way too damn short to waste precious energy hanging around such unbridled assholery.

But there's a tiny moral to the story, and it's this: having cancer is a lot like pregnancy in yet another way, besides the puffy ankles, nausea, and weird cravings. It seems to be an open invitation for intrusive strangers to shower you with uninvited amateur medical advice and regale you with horror stories. And no matter what decision you make about your treatment, some irrelevent asshole with pronounced boundary issues is going to vehemently disagree and loudly predict your imminent doom to whomever will listen.

But you have to stand your ground. It's your life, your cancer, your survival that's at stake. And this, my friends, is why the great benevolent Flying Spaghetti Monster gave us tall proud middle digits on both hands. If cancer doesn't teach you anything else, it will teach you to use them wisely and to use them well.

The author after enjoying yet another stack of delicious high protein 27-grain pancakes with organic raspberry preserves.


Blogger Trasi said...

OMG - what a LOOOO-HOOOOO-HOOOO-ZERRRRR that guy is! Big L-shaped thingie on my forehead at this guy.
Okay, I'm no expert on nutrition. I get confused by all the stuff that says "don't eat things which are white" or "don't eat carbs" or "eat these things together and they are like feng shui for your body" or "watch your intake of fats" blah blah blah. BUT... there seems to be something that I can follow, which is the CALORIE model. You take in more calories than your body is using, you gain weight in the form of fat. You can also gain weight in the form of muscle, but I'm not guessing this is what cancer patients are doing. If you don't take in enough calories for what you're using, you lose weight. WHY would gaining weight be a healthy choice? I would think maintaining it would be healthiest. Sure, let's don't try and LOSE a bunch while on chemotherapy. I agree there. But to maintain weight? That seems spot on. You go, Liz. You do what you know is right and fuck 'em in the neck.

4:57 PM  
Blogger Kanga Jen said...

I love you, Liz

5:16 PM  
Blogger Rose said...

I love this last picture!

When you meet your untimely demise at the age of 98 in a freak skydiving accident, I hope that your grandchildren will ensure that this picture is placed on your tombstone.

5:56 PM  
Blogger SPOA said...

That's just goofy. It's a well known fact that a low calorie diet boosts immunity. I read a book not long ago about a man in the U.K. (do you know what I'm talking about, I forget the name), who went on an extremely low calorie diet to slow the rate of his cancer growth and succeeded. He's dead now, but lengthened his life considerably.

The guy's a dick who wrote to you on that forum ~ I hate that about forums, people get the gumption to preach and jump on the bandwagon with such ferocity and jeebus, the arrogance is astounding. Flip away I say. (And god, besides being a dick all those typos make me want to kill him.)

I read your blog every few days and it sounds to me like you are an informed patient. Doing great? That is surely a relative, hour by hour idea for anyone, only you would know that. But you are wise about your predicament and seemingly finding your way through a really dark place without even any assurance of light at the end.

But somehow it seems like you know it's there and you're feeling your way through anyhow.

Nice boa :)

6:00 PM  
Anonymous Anonymous said...

What a jerk. I hate most online forums for that reason. I prefer to avoid jerks if at all possible.

I'm an anonymous poster who has been visiting you for a while, and I must say, as a professor of cognitive science, I appreciate your references to things like peer-reviewed articles and science. I wish my students appreciated them as much as you do! But what gives--how are you so knowledgeable? And how come more people aren't like you? <3

7:06 PM  
Blogger quixoticmantis said...

I <3 you.


7:20 PM  
Anonymous Anonymous said...

High protein 27 grain pancakes with organic raspberry preserves!?!?!

Breakfast at Lympopo's House!!!

(Running to airport)

BTW - Loved the couture!

8:41 PM  
Anonymous Anonymous said...

Wow I'm sorry that guy was giving you such grief. I think you're right, you somehow tapped into some part of his knowledge where he stops being reasonable and scientific and gets all weird and hostile. You are also right that it's not about you. But still: like you don't have enough crap to deal with already!

9:17 PM  
Blogger Ya Looblue said...

wow. aparently his "pro" status didn't come with any compassion, understanding, or tact. funny, that. sorry you had to leave those boards. it's such a personal thing. until he's done what you're doing, he should shove it up his dense ass. pff. what a wanker.

9:18 PM  
Blogger L. said...

Delurking to say, what an incredible dick!

And here comes the sickening, sugary gush, which you can avoid if you`re feeling nauseous: I love your blog, and your whole attitude described herein, and I will also pray for you (though there`s no guarantee anyone/anything will even hear me).

1:58 AM  
Anonymous Anonymous said...

Reading every day...always, thinking, hoping, wishing, laughing, admiring your spirit in a huge way. Not always knowing what to say and how to say it. You give ME strength and perspective in my own life. And I bet I'm not the only one (I hear a song with those words, sounds like Paul McCartney, and I can't remember the song). Those 5 words and the melody will now haunt me.

Given your training experience, I think you've developed a new exercise for him. Could be part of a new personal training regimen suited just for him.

Extend flipper digits
Forearms bent at the elbow
Forearms facing up
Feet astride
Legs bent slightly
Back straight
Cross arms over one another
Slowly raise forearms w/flippers extended
Raise forearms up
Poke flippers into nose, one into the opposite hole
Repeat 2,437 times
Repeat with this variation:
Assume a more crouched position, back rounded over, and insert flippers into asshole. Repeat 5,446 times.

You know, for a brief moment, I took the compassionate side and said, well, maybe he really cares about your health and is fearful either for you or for himself and doesn't know how to be anything other than "strong" and in denial about when your health can turn on one despite all of one's efforts. Nah. He has ISSUES.

another susan

5:36 AM  
Anonymous Anonymous said...

Also de-lurking to say there's a special place in hell for this arrogant asshole.
Let's all take a moment and picture him there. On prednisone, 100 lbs overweight, hungry and lumbering around like the Michelin man, surrounded by hypercritical people.
Loved your writing about growing roses. Love to see you haven't lost your spirit. Sending you healing vibes.
From a fellow pain-in-the-ass in Michigan.

6:33 AM  
Anonymous Anonymous said...

bada bing!!! the two finger salut is fantastic!!! can I use it as my avatard? lol

serious, glad to see your fiesty at the moment. the prednisone urge to eat reminds me of the urge a big fat girl has to eat despite the fat killing her. lol not that I have experience with that rofl

7:43 AM  
Anonymous Anonymous said...


Just read this article this morning and thought it might be of interest given the food theme, it is about spicy food and its effects on cancer cells and sounds like there is real peer-reviewed sceince behind it.


Those pancakes sound awesome!

8:20 AM  
Blogger A.M.S. said...

Just another fan from the old days, delurking to join you in your two-finger salute. What an asshat he was. Glad you are a strong enough person to recognize that about him...many wouldn't be.

Um, can you share the recipe for the pancakes? Now I'm ravenously hungry.

10:05 AM  
Blogger L. said...

I thought more about the arrogant asshole.

Is it possble he experienced a loved one wasting away before his eyes, dying of cancer?

If so, maybe his comments are understandable (though not excusable) because he was so blinded by his own memories of pain that he didn`t realize he was being an idiot.

If not -- well, then he`s simply an asshole.

1:01 PM  
Blogger Alto2 said...

How much weight would you like? You can have as much as you want, in increments of 5 pounds, up to 100 lbs. Here, take a cheek!

2:24 PM  
Blogger istanbulwitch said...

This comment has been removed by a blog administrator.

9:09 PM  
Blogger istanbulwitch said...

This comment has been removed by a blog administrator.

9:19 PM  
Blogger istanbulwitch said...

and did I tell you, you look like a sad near to be dead clown in your color striped wear, your ornements and your sad middle fingers up.
Tried so hard but didn't win did you?
I don't think the clownwear will heal you, so be real.
You have lymphoma which at your age is a killer.
You are not going to ever recover from it. So, why not accept that fact, that no matter how hard you tried to be on this world forever with cron and body building, you're still going to die earlier than most people who never attempted any of those?

9:40 PM  
Blogger Lymphopo said...

I guess this is mental illness and I should be feeling more charitable and empathetic, but all I feel is massive irritation. Sorry, folks. Comment moderation is on, and istabulwitch won't be back.

12:58 AM  
Anonymous Anonymous said...

nah, moderate the istabulbitch away... this is your space, not other unmoderated places.

3:18 PM  
Blogger Lymphopo said...

Hey, Kimberli--Speaking of moderation, I tried to leave a comment on your BR training log the other day and it told me that the administrator has locked me out of posting there. So much for Neocrone's "tough luv" theory, eh. Sounds more like a classic narcissistic injury to me.

Posts from Istanbulwitch are like litter on the sidewalk: nothing to do but sweep them away.

5:04 PM  
Blogger Teresa Hartman said...

I am so glad you are writing in this world! The last paragraph plus your photo are all I need to link to when someone - misguided health providers, family members, friends (that turn out to not really be friends) - judges my path on what they think I should be doing. Sending strength wishes from a 7-grain Kashi eater and whey drinker (dang, I miss the other things, though!).

1:30 PM  
Anonymous Anonymous said...

Yo Leda,

You know how there's all those movies about interconnectedness? Well I'm thinking about getting on the bandwagon--making a documentary-type thing with short biographical snippets, with each person's connecting to the next. The goal is entertainment through anticipation of how the current story will connect to the next one. Anyway, you seem to be full of awesome stories...wanna maybe contribute at some point later?

2:40 PM  
Anonymous Anonymous said...

so nice to find energetic YOU while looking for calorie-dense recipes for my dear friend. She just came home today after hospitalization resulting from after-effects from her first chemo. it's like experiencing hearing something again and again after learning about it..how COULD i have missed it before in my life--the the great benevolent Flying Spaghetti Monster! Rock on, Dear!

11:42 PM  

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