I read a med journal article yesterday about vegetarian teens being at risk for anorexia and it got me thinking about cancer survivors and eating disorders.
In my late teens and early 20s I was anorexic and slightly bulimic – no puking just herbal laxative tea. A vegan, lola-granola, ballet dancer, I was afraid to eat rice cakes because they had .05 grams of fat. I obsessively read labels and scrutinized every ingredient that entered my mouth. I exercised like mad and couldn’t look at my body in the mirror. Reflecting on this, I’m damn proud that I figured out how to pull my ass out of such a scary starvation addiction.
By the time I was diagnosed with cancer at 27, I was eating normally, had hips and curves, loved French pastries and brisket. So it was a jolting mind fuck when part way through my treatment I realized how much this disease could mess with my appetite.
With cancer, I wasn’t eating because I was dizzy and nauseous. My treatment protocol necessitated that I inspect for iodine every morsel I put in my mouth. I was bombarded by media images, books, and trendy articles telling me that if I ate vegan, avoided sugar, and subsisted on vegetables I could beat my cancer. My medication made me shed 18 pounds. I looked and felt anorexic all over again, even though I wasn’t.
I had some serious in the mirror talks with myself to keep me on track and not let all the side effects, stress, and fashionable cure diets slide me back into my horrible habits of the past. I’m still stick thin from my meds, but my mind is balanced and I’m aggressively trying put on pounds while eating healthily. (Yes, you can add your name to the wait list of people who want my problem.)
Fifteen-percent of young women in the U.S. display some kind of eating disorder patterns, so I cannot be the only gal (or guy) who has dealt with young adult cancer and the memory of an eating disorder. Yet, I never hear it spoken about. Do you? Did food, appetite, weight gain, or weight loss ever mess with your mind during treatment? If so, how did you deal with it? Do you ever take cancer diets to an extreme where it seems obsessive or unhealthy? Where is the balance?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
April 17th, 2009 at 4:09 PM
I was the lovely opposite of you. I went up two pant sizes and continue to struggle for the motivation to lose it. I mean I want to wear my old clothes, I even hung up pictures of me from high school on my fridge — but cancer fatigue got the best of me and my waistband. :)
April 17th, 2009 at 9:16 PM
I’m in shock and awe that you managed to lose weight with thyroid cancer. I gained a ridiculous amount of weight really fast just before they found the cancer, and now it takes an overwhelming amount of effort to stay at the same weight. Admittedly, I started using food for comfort as well, so i’m sure that hasn’t really helped things.
April 18th, 2009 at 10:10 AM
Robin,
Yes, since thyroid cancer, I now weigh as much as I did when I was a freshman in HIGH SCHOOL. I chalk it up to being hyperthyroid, as my docs have me on a rather high dose of levoxyl (synthroid) to suppress my TSH level, in turn suppressing the cancer growth - fingers crossed!
For a while I took delight in the attention I got from being so thin, but then I dropped enough weight that I realized, people thought I looked scary skinny. The shape of my face became up for grabs conversation: “You’re too thin - your face is too drawn.” I agree, too skinny is unattractive, not to mention unhealthy.
Kairol
April 19th, 2009 at 1:29 AM
Kairol,
For the past few years my doctors have been doing the same thing, until they decided it just wasn’t working… For me it makes sense, keeping my tsh low etc. for them it they don’t believe it has been worth it. Not that this happens to everyone, but if you are dong this, and your doctor decides its needs to be changed, there are things to expect. Going from having high meds, to lower meds is a lot like going hypo… I don’t know if docs realize this… for a long time, even after the 8 weeks it takes to get used to the meds, it still feels like you are going hypo. You feel tired, you gain weight… your body isn’t used to the lower dose. But… and this part is important… you need to trust your doctors. I know its hard… by despite sleeping excessively, and gaining about 5-10 pounds every time they adjusted my meds, I still feel better now, after getting over the hard part, than I have in 5 years… it just takes a lot of time… i know that is hard, but it really all we have.
April 19th, 2009 at 1:46 AM
… Besides re reading what i posted and seeing huge grammatical mistakes, I wanted to point out it that what I wrote was mainly for other thyroid patients. If those of you out there don’t know, your thyroid is what controls your metabolism, and having it removed can have extensive side effects, be it gaining or losing weight. And how it effects you is dependent on the thyroid condition you have. Being a formal junior Olympic athlete, I would give up almost anything to be in Kairol’s position of losing weight with my condition. But at the same time I’ve come to recognize, losing weight with cancer isn’t always a good thing… and in that respect, and having my type of thyroid cancer and having it have the effect it does have on me, should not be totally regretted, but rather, acknowledged that it could have been worse. I’m not sure if that makes sense… Its sort of trying to combine the good of both aspects tied to cancer and weight. Kairol, struggling with weight as a single, cancer survivor, means a lot in terms of dating, and self-confidence… for me it seems to be tho=e opposite experience as you, as I just keep on packing on the weight, yet It is very difficult having the confidence to see yourself for what you really are, and for those of us out there still looking for what we are; your story about finding your husband is inspirational.
-robin
April 19th, 2009 at 6:29 AM
When I had my mastectomy from breast cancer I had reconstruction at the same time. It consisted of doing a flap and moving belly fat to make the new breast. This will sound twisted to some but I was glad to get the free tummy tuck and yet still worried that my belly was fat! Yes, the fat was surgically removed and I still thought my belly was too big! I also lost weight during chemo and then put it back on after I finished when my appetite was better. I hate to say this but I liked the cancer diet. I felt like it was a small benefit of chemo to loose weight. Pretty twisted huh? I have always struggled with self esteem issues since childhood thinking I was fat and although I never was diagnosed with an eating disorder but I constantly patroled what I ate and obsessed over my weight, skipped meals. Today I am cancer free and I am in menopause thanks to chemo noticing that my metabolism has slowed and I have to work much harder to stay in shape and keep weight off.
Great topic Kairol! Something I hadn’t thought about but am sure it affects many others out there.
May 15th, 2009 at 1:22 AM
Hi there. I had slowly been losing energy and gaining weight for about 5 years. Nothing I did really helped me lose weight. I cut calories to 1,000 a day and exercised for 30-45 minutes every other day. I still gained weight. I have always been somewhat “thick” but it just got uncomfortable. Then I couldn’t breathe, the doctor I was seeing said it was probably from depression, because I was depressed over gaining weight and wanted to put me on anti-depressants. This comes after trying asthma medications and telling me I just didn’t know how to breathe mind you. Also she insisted that I must be cheating on my diet and exercise…. ugh! It was one of the hardest things to do but I followed this regime strictly for 6 months, and I gained 4 pounds. So after she suggested the anti-depressants, I made a pact with her. I promised if she gave me a chest/neck x-ray and it came back clear I’d take her drugs. Well low and behold it came back with scary big dark spots on it, right in the middle of my neck…I had papillary thyroid cancer and the growths were pushing on my wind pipe which is why I couldn’t breathe. My thyroid levels were so low that this is why I gained weight even while starving myself and exercising when I just wanted to lay down. Of course after finding out I had these growths I felt for them myself, and could feel them! I looked at a progression of pictures and my neck slowly did look bigger and uneven… but I wasn’t aware of this at the time because I was so concerned about how fat I was, and how big and akward I felt… in my mind I was just fat,not sick. Now i have leveled off a bit, I have only lost 6 pounds since the surgery over a year ago, but I have stopped gaining weight. Sadly, my pituitary gland seems resistant to levothyroxine. I take 300 mcg’s a day and my free t4′s t3′s are barely where they want them. I don;t eat for 4 hours after I take them, so they can properly absorb. I know I am doing everything I am supposed to, but I am still huge. I exercise and it’s even more of a reminder of how big I’ve gotten, because things wiggles and shake when I move! lol I have had a bit of gain and loss in the last few years which also leaves my tummy saggy.. and I am thinking I will need a tummy tuck to get rid of it even after/if they regulate me where I have a normal metabolism again. I was already self conscious about being thick before all of this, now I feel like crap every day, and every time I get dressed… Sorry I rambled on and on, but it’s no easy thing. I felt like it wasn’t “real cancer” and that I was just fat and if other people lost weight so quickly after this, why couldn’t I? It was real cancer and I can;t lose weight so quickly because everybody’s body and chemistry is different, and will react differently. I understand this and I hope to feel “normal” about my body someday, no matter what size I end up. Oh by the way, I never went back to that doctor after I got the results of the x-rays. I immediately made arrangements through referrals from my oncologist, enodocrinologist and radiologist. So keep you chin up, and feel whatever odd comfort you can that you are not alone, and you are a survivor! :) Love, peace, and joy!
May 20th, 2009 at 8:29 AM
I found this blog by searching for links between cancer and eating disorders. I am 21. I am have been struggling with an eating disorder since I was 17. I know that it is wreaking havoc on my body, especially my immune system. Last year, I came down with Mono and Strep throat at the same time. My body is weaker than it’s ever been. I recently found two bumps on my body that are scaring me. I know I should get it checked out. But I want to convince myself that it’s not anything to worry about. My research into my self-diagnosed eating disorder has shown me that all of my vitamin deficiencies have left my body vulnerable and unprotected from cancer and infection. I suppose I am writing you all of this because I want to know if your cancer was linked to the starvation your body endured. I am very afraid. But the fear is a very secret one and I don’t know how to go to a doctor and say “I need help.”
May 20th, 2009 at 10:42 PM
Dear Baker,
First a word about the big picture: There are many, many reasons to have lumps in your body for example: lipomas, benign cysts, swollen glands, and yes the evil cancer. If you are online googling this topic it means this is weighing on your mind. The stress of wondering about cancer just completely sucks. At some point the stress of wondering gets as big as the fear of actually going. Don’t wait until then. Go now knowing that you are not making an appointment for a cancer sentence, but going to check things out. I know how especially hard it is to care for your body when you are trying to starve it at the same time. I have no easy words to make that dilemma disappear. But know that I am rooting for you big time and will throw you a great party in my mind when you have that appointment and get it checked out.
About your eating disorder - trust your self-diagnosis. There are people in the healthcare field who want to help you and make it better. If your doctor is not the right person to tell about your eating disorder, then find a good therapist, someone you can talk to who will be on your side. It is hard work going through this disease but I promise you that there is an amazing life waiting for you on the other side that is a million times better than the pain you are enduring right now.
Please keep me posted on how you are doing.
Kairol
May 30th, 2009 at 4:16 PM
Hi
I have been suffering with an eating disorder for 4 years. I have been through a hospital admition and alot if out patient treatment. This year, my weight got really low, but i decided that i wanted to overcome the problem once and for all so got a meal plan etc. then i was diagnosed with thyroid cancer, and after the radioactive iodine treatment gained weight. I am now at my personal target weight and due for another dose of radioactive iodine, but i am terrified i will gain weight and feel the need to lose it all again. I’m so worried about it that i am haveing tgrouble sleeping, whilst eating is becoming more of an issue again. Does anybody know how i can avoid gaining weight? Sorry if i sound ridiculous, but an eating disorder is what it is i guess.
Phoebe
May 30th, 2009 at 7:09 PM
Phoebe,
Cancer is stressful, and adjustments to thyroid hormones can cause anxiety - the two together seem to make the perfect breeding ground for old haunting challenges like an eating disorder to creep back in. In the end my eating disorder was not about food or my weight, but about control. I wonder if the right question to ask is not how to avoid gaining weight but where can you get support for your anxiety? If gaining a little extra weight is causing you to lose sleep, then I think the things to focus on are your feelings more so than your diet. I have load of compassion for what you are struggling with as I have been there myself. If you read my book Everything Changes, take a look at chapter 3. In this chapter Wafa’a deals with a lot of issues that mirror an eating disorder and I have found her words to be profoundly helpful. Hang in there and stay in touch. Kairol
July 20th, 2009 at 6:45 AM
its disgusting how anorexic people get !
this is silly, they aint fat and they over react.
everybody is beautiful in their own way and you shouldnt have to hide yourself.
November 10th, 2009 at 8:54 PM
im so depressed.. like omg im sooo skiiny its so miserable.
November 10th, 2009 at 11:47 PM
I actually really appreciate the comment above. I realize that it comes across as slightly obnoxious when I complain about being skinny. It is hard feeling well but having people look at me like I’m still very sickly because I’m all gaunt and nasty thin. It is hard having relative look at me with scorn and tell me I don’t look good and I have to gain weight. People would never tell a fat person they don’t look good, but folks don’t have any qualms telling a thin person they look like crap. Is it the worst thing in the world? No cancer treatment and death and poverty certainly suck more. But being concentration camp skinny is just no fun.
April 9th, 2011 at 12:42 AM
This is about my best gf. She`s getting diagnosed with cancer this week. It is already in her liver. IN about 4 days she`ll hear if the docs can do anything for her. As long as I`ve known her - and that`s over 20 yrs now) she`s been boulimic. I`ve been looking for a link between eating disorders and cancer. When I read how people should eat before,whilst and after treatments, I read an exact opposite diet of hers. She`s addicted to mayo and her vegetables leave her body the wrong way even before they`ve been able to do any good to her.
I say she`s no longer in the position to have the “luxury” of an eating disorder and she should start eating to heal her body.
She`s severely overweight and throws up on a more than daily base.
Suggestions or thoughts anyone??
A Dutch worried best gf
April 9th, 2011 at 1:07 AM
Dear Dutch GF,
I’m so sorry to hear about your friend. You obviously care a lot about her and it must be pretty heartbreaking to watch her go through an eating disorder for so many years and now cancer.
Regarding your curiosity about the connection between bulimia and cancer: There are so many reasons why people get cancer, that even if bulimia were one of them, it would not necessarily mean that it is the reason that your friend got cancer - it easily could have been genetic, environmental, or other reasons that we don’t yet know. So I would not concentrate so much on the cause of her cancer, but on ways you can be of help to her now.
Cancer is so extremely stressful, and while to some it might seem like the perfect wake-up call, in reality the intensity of the situation can drive many people to engage in destructive behavior as a way to escape the emotional and sometimes physical pain. What your friend needs the most now is love, love, love, love. It sounds like you have a lot of it to give to her.
I do still think it is important for you to be concerned about her nutrition. Realistically, if she has been throwing up for 20 years, it seems unlikely that she would change her behaviors anytime soon. I think it would be a good idea for you and her to get a clear picture of what her basic nutritional needs are considering her bulimia. It might be especially helpful if she saw a nutritionist and/or if you accompanied her to a doctor appointment where you could learn more about how to maintain a base level of nutrition. Many cancer professionals are well versed in how to get nutrition into people who throw up often because of chemo. It is possible that some of those suggestions would actually be good suggestions for your friend too.
I would not try to approach her about eating in order to “beat her cancer” or to “cure” her cancer. But rather approach it as what is the bottom line of nutrition you need in order to stay alive. Try to find foods she is willing to eat and not throw-up and make sure she gets enough of them.
There is a cookbook for cancer patients called One Bite At A Time. She might totally reject the ingredients in there, or she might find a few recipes she is willing to eat bits of throughout the day.
You sound like an amazing friend. She is so lucky to have you.
June 1st, 2011 at 10:51 AM
I came across your posting while seeking information - any information - relating to cancer causing or triggering eating disorders in young children. My son, 6, is being treated for cancer and while he has always been a small & slightly skinny kid, the cancer didn’t take too much off of him, until he hit a couple hurdles relating to an infection and side effects from radiation. Now, in 6 weeks the kid has lost nearly 20% of his body weight and is beyond stick thin. As parents, we know that at his next appointment this is going to be an issue if he doesn’t put some weight back on.
I could go on about the struggles as parents, but bottom line we’re trying to get through to a child the importance of eating - despite the fact that nothing tastes right (cerebrally he’ll think something “sounds” good until it’s put in front of him and he takes a bite, then he can’t bring himself to eat it). But, as we try to battle finding ways to get him to eat and pack on some weight before his next appointment, I’m dismayed at the lack of information out there for people dealing with eating challenges during cancer treatment. It’s as though it’s like a dirty word to suggest that chemo therapy and it’s side effects could trigger an eating disorder in children.
Anyway, I went down a tangent when really my inquiry is whether or not you’ve found resources out there or are aware of resources addressing eating disorders in relation to cancer &/or chemotherapy treatments.
June 1st, 2011 at 12:26 PM
Dear Worried Mommy,
Thanks for your comment. Tangents are what this blog (and cancer) are all about.
I have not come across any additional information about cancer and eating disorders. I do have some other brainstorm ideas, some of which you may have already tried:
1. Is there a registered dietitian at your son’s cancer center? It was years into my cancer care before I realized that I could, for free, have sessions with a RD at my cancer center. My cancer center is out of state and they even accommodated me by making phone appointments. The RD dealt with cancer and weight loss day in and day out and was full of very good suggestions for me.
2. Of the foods that your son can tolerate, are you able to sneak in protein powder or added oils? These can help a lot with weight gain, though I would certainly call your doctor about it first just to be sure he can handle large amounts of protein and fat.
3. Author and Chef Rebecca Katz has a few cookbooks out for cancer patients. Most of the food is kind of adult like food that I cannot imagine even a healthy kid wanting to eat. However, the backbone of her recipes could serve as a good guide for you in trying to find new foods for your kiddo. She talks a lot about adjusting the fats, salt, sweet, and sourness of foods to make them more palatable. So you can experiment with altering the tastes of foods by adding more salt, adding some lemon, toning it down with butter or oil, or adding sugar.
4. When I was having a hard time eating because of a metallic taste in my mouth, I had to change my concept of what a meal was. Of what food was. I stopped thinking about what I might want to eat, because as you said, the taste buds and brain can be two different beasts. Instead I just nibbled my way through my fridge as though it were a science lab or a test kitchen. Instead of preparing foods, I tried to just find tastes that I could handle. For example, I’d take the tiniest taste of jam or cheese or mayo or peanut butter. Just a dab on my tongue. What I didn’t like I would spit out. What I did like, I would eat spoonfuls of it as I was able. I completely stopped focusing on meals, and instead focused on taking advantage of the moments when I had an appetite and just getting tastes in me that I could handle. Even if it was as bizarre as small pieces of cheese with big globs of mayo. Experiment. Even if it is unlikely combos. I also went for weeks living off of Boost and Ensure.
5. It also helped for me to not smell food being cooked, to not eat around other people who were eating, to eat while sitting on the floor instead of at the table, to eat if front of the TV and to eat off of plastic instead of metal silverware, or to just eat with my hands.
6. I had to change my mindset. To not stress out too much about food or else it would turn into an eating disorder mind trip. I just had to try to be gentle and chill. Easier said than done.
I cannot imagine how hard it must be for you to see your little guy so very skinny. I hope you find some helpful info to get you through this tough, tough time.
All my best,
Kairol
April 17th, 2013 at 9:32 AM
[...] for instance, this article by a woman who had an eating disorder prior to her cancer diagnosis, and talks about her struggles [...]
November 27th, 2013 at 9:36 PM
[...] Photo source: https://everythingchangesbook.com/kairol/cancer-and-eating-disorders [...]