How My Chemo Treatment Led To An Eating Disorder

Does anyone else shudder when they hear, read, or even think of the word “prednisone”? 

Does anyone else shudder when they hear, read, or even think of the word “prednisone”? 

Most cancer patients are intimately familiar with how their various cancer treatments (chemo, radiation, surgeries, etc…) can drastically impact their physical appearance.

Losing weight, gaining weight, hair loss, skin rashes, scars, loss of limbs or other body parts, generally having the complexion of a blood-starved vampire, etc… are all fantastic examples of this. As if having a life-threatening disease and feeling constantly sick doesn’t lower your self-esteem enough, you usually display apparent signs of your illness on the outside that can make you feel self-conscious (to say the least).

During chemotherapy, I looked nothing like myself. The severity of my treatment caused me to look as sick as I felt, and something about my appearance was always changing as my treatment progressed.

When I looked in the mirror, the only thing that remained consistent was the color of my eyes. I could have been considered a freaking shapeshifter, by all definitions. 

However, there was ONE THING about my appearance that fluctuated (in all the worst ways) more than anything else: my weight. 

When all was well with my health, way back about a decade ago, my normal weight was 115lbs (For your reference, I’m 5’2”). Within the first few weeks of starting chemo and high dose steroids, I gained 55lbs in water weight, all without moving from my hospital bed or eating a bite. (Also, I was comatose during the entirety of week one). 

Sidenote: Just picture the cells in my body screaming in panic as a shitload of toxic chemicals entered my system and began wreaking havoc. The emergency council of those cells made an executive decision to retain water in an attempt to dilute the high levels of toxicity. 

I remember when I first got home, my mom tried to help me change out of the hospital garb. None of my clothes fit me. They were all too small. Thankfully, I was too busy dealing with my other dozen or so physical side effects that were a lot more uncomfortable and trying to really let it sink in that I was essentially dying. So, my weight only made me scared.

I didn’t agonize over it because, at that time, my gaining weight was just a huge indicator of how sick my body was. 

When my treatment changed a few weeks later, and I got off of Prednisone and Dexamethasone, that weight slowly came off. A few months away from steroids, coupled with my muscles atrophying from disuse (I was too weak to move around on my own, and we were too concerned about a dozen other critical things to prioritize PT in the initial stages). Between the chemo wreaking havoc on my body and me being too nauseous to eat, I found myself down to 80lbs.

That is where I stayed for over a year. My old clothes—too small when I first came home from the hospital— hung from me like I was a real-life stick figure. 

After that first year, I entered into my maintenance period and started taking copious amounts of oral prednisone. This drug alone brought on a new list of side effects. Here are the additional things prednisone loaded onto my already-piled-high plate during the year and a half I was taking it:  

Some of the more rare side effects I experienced:

• Muscle pain and cramps
• Weakness
• mental/mood changes such as depression, mood swings, agitation. (Again, major understatement)
• Bone pain
• Easy bruising 
• Puffy face (picture chipmunk-faced Aspen in all her glory)

Does anyone else shudder when they hear, read, or even think of the word “prednisone”? 

MY GOD. I’m laughing as I write this, thinking about how ridiculously bad this time of my life was. Have you heard of roid rage? Yeah, that was me. I had to warn my family to not interact with me during my spurts of prednisone.

I would get angry about EVERYTHING. And then I would take my angry self to bed and WOULDN’T BE ABLE TO SLEEP. This made me angrier, naturally. It was a vicious and mentally exhausting cycle. 

(As with all of the drugs and chemos I took for my treatment, it was a case of “if she stops taking this, she will die. So, facing the side effects is a better option”) 

Even though I was still unable to eat very much, my weight slowly and steadily climbed over the course of the following few months.

Prednisone weight gain is unique in the way that it causes you to put on weight around your trunk, face, and upper limbs. I literally ballooned up until I weighed 160lbs (50lbs over my normal, healthy weight).

I hated going anywhere in public, knowing that people would look at me and assume I had bad dietary habits. In reality, I was only being able to stomach a bowl of cereal each day.

The kicker? I had NO IDEA MY WEIGHT GAIN WAS CAUSED BY PREDNISONE. 

My doctors did not explain this one common side effect of prednisone. We were all so busy just trying to keep me alive, that it got lost in translation. My medical team had long surpassed the point where they tried to discern which drug caused which side effects and explain them to my mom. There just wasn’t enough time in the day.

I had been on my treatment for years, and at that point, I was just that quiet, ever-suffering patient who had a lot of physical problems, discomforts, unusual conditions, and limitations. 

No one explained anything to me in detail. My 14-year-old self didn’t understand why my body had changed so much; I was just so uncertain of everything that was happening to my body, and I didn’t even know what was normal for my body anymore. But my mind began to race as I came to my own ill-informed conclusions about my weight.

I started to be hesitant about what I was eating, even though it wasn’t very much in retrospect (one small meal a day). Hell, I didn’t even know how much normal people were supposed to eat to stay healthy. The “proper amount of food was an ambiguous concept for me at the time. 

The final nail in the coffin, so to speak, was one wayward comment from one of my oncologists:

Does anyone else shudder when they hear, read, or even think of the word “prednisone”? 

After hearing these words, I choked down my tears and nodded, feeling dumbfounded and ashamed of my entire being.

My mom was livid. She was already concerned with how little I had been able to eat over the previous two years. She knew this doctor was not taking any of my medical conditions into consideration. 

But regardless, the damage had been done.

And if I could pinpoint the exact moment when I decided to stop eating altogether, it was that moment in my treatment clinic when a doctor–who was supposed to know what was best for my body—told me to “cut back” on food. 

This is when things all began to go completely downhill—This was the moment I unknowingly began to sprint at full speed down a path leading me toward a very dangerous eating disorder: anorexia.

(Let me state here that when I confronted this oncologist years later and told her about how her comment affected me, she apologized profusely and agreed that the weight was all caused by prednisone. She felt terrible, and I forgave her. However, I made it clear I didn’t want her to give any impressionable kids the wrong idea in the future.) 

Above is an image of the chart (found in my online medical portal) that shows how my weight changed from 2013 to 2018. The black line begins when they first started taking my weight a few months into my treatment. This was soon after I had gained weight from the first round of high-dose steroids. It’s pretty high as you can tell. You can see how much the line fluctuates over the next few years. The second-lowest point is when I was around the time I was confronted about my eating disorder.

We will get into that soon.

Keep an eye out for my next post:

“How My Chemo Treatment Led To An Eating Disorder Part 2”

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