Let me preface this post by saying: I’m no pro and won’t ever claim to be. This blog, these posts, are based on me and my experiences alone, and are not at all meant to be a guide for anyone! (It would be like the blind leading the blind, trust me on that.) With that being said, please understand that these posts are all my thoughts, opinions, experiences, and nothing more. Maybe I’ll share a fact I’ve learned, maybe I won’t. Just don’t take anything I say to be some kind of gospel truth, aside from “Stay positive!” — that you can quote me on and follow all you want! 😉
So, truth time. Chemo and food, for me, don’t really go together. If you’ve read some of my previous posts, you realize that this is a pretty big freaking deal for me because I like to eat. I like food. It’s in my blood!! Food = yum = happy.
Ugh. Not so much these days.
I heard from various sources that I’d have a weird taste in my mouth and things might taste different. There might be some nausea and other stomach issues that affect my appetite. I had no idea what exactly that meant for me, and I knew it would be different for different people because nearly everything is, so I didn’t do too much internet research on it. Will it last a few days? Weeks? Months? Gosh, I hope not.
Chemo was on a Monday. I was able to eat lunch and dinner the day of chemo, no problem. The next day the metallic taste arrived. I was still able to eat regular food, but things started to taste a little funny. As the week progressed, I was still able to eat pretty much whatever I wanted (of course, I was trying to eat healthy), but tastes were still changing. Salt was too salty and sweet was too…weird? I don’t know. Only certain sweet flavors were bizarre, like Powerade. Mint chocolate chip ice cream tasted exactly like mint chocolate chip ice cream. The ginger ale I ordered out at dinner one night was so sweet I thought all my teeth would fall out, but the ginger ale out of a can that same day was A-OK.
Fast forward to Saturday (five days post-chemo). Here’s when my stomach started to get a little unhappy (this was post-constipation, for those of you following my BMs, and the start of the loose stool phase). I managed a normal lunch, but dinner? No good. Sunday…food sucked. Everything tasted terrible. Textures were an absolute mess. Water tasted like toilet water smells. It was horrible. Monday, more of the same. Tuesday, more of the same.
On Monday, I’d called the doctor’s office with my laundry list of symptoms and asked what was normal and what wasn’t. (And by “normal” I meant typical side effects of my particular chemo cocktail.) Pretty much everything I’d been experiencing was normal. She emphasized the need for fluids, told me to try to avoid caffeine since it’s a diuretic (Side note: Kudos to myself for spelling “diuretic” right on the first try). I asked for food recommendations and anything I should stay away from. She gave me some good ideas of some mild tasting things with smooth textures and good nutrition. She also said that they don’t usually tell patients NOT to eat something. If I crave something that’s not necessarily healthy, and I can eat it, I should eat it. Any calories were better than no calories. She kind of implied that this wasn’t the time to be picky, which I totally understand. She also recommended protein/meal replacement shakes, if I could find a flavor that I liked, because they can contain nutrients and calories, and are generally easy to get down the hatch.
Anyway, on Tuesday, I went in for my labs and had lost five pounds. Five pounds in a week! Barely eating, forcing down small spoonfuls of whatever didn’t taste or smell like it crawled out of low tide, and struggling with fluids for 2-3 days kicked my butt. I had the IV fluids, not because I was dehydrated, as I mentioned in my post from that day, but because I felt bad and they said it would make me feel better.
And I did feel better, but not super. Tuesday night I had macaroni and cheese and green beans – progress! Wednesday started to get even better. I could experiment with some more food, and was able to take a little more in. That night I even had pizza!
From the crazy days of no appetite and no taste, I felt like my stomach had shrunk down to the size of a baseball, so it was small portions, but it was still progress.
Thursday was like a home run. Overall, I didn’t feel great, but I had boneless chicken wings for breakfast (don’t judge, they were left over from pizza night and they were delicious), soup and macaroni and cheese for lunch, and a grilled chicken salad for dinner.
I went from contemplating over sending Brad out to get me jars of baby food, to being able to eat grown up food, and it felt amazing. I felt like I could do anything.
Then I got this amazing looking pumpkin cream cheese cake from Newks. It looked good. It smelled good. But guess what? I couldn’t taste it. Not. One. Bit. I’m not even kidding. It tasted like N.O.T.H.I.N.G. Nothing. Nada. I mean WTF? And what was worse? The texture of the bite of nothingness was so terrible, like gritty. Ugh.
Chemo has completely ruined my mouth!
That moment…the moment that piece of cake hit my tongue and tasted like nothing was probably one of the worst moments of my cancer journey. I know that sounds dramatic. I know it’s just cake. The cake is not the point. The point is that being able to taste food is just one more piece of normalcy that I’ve been robbed of because of this stupid disease.
How many times have I contemplated the flavor of things beyond yum or yuck? I eat what I want, when I want, and appreciate it in its entirety – I don’t break it down into little sub-categories like nutrition, flavor, fullness, satisfaction, etc. How many times have I taken taste for granted? Who even thinks about things like that?
I had french fries with ketchup at lunch today. Couldn’t taste the ketchup.
What is that?
Well, that was a rhetorical question. I don’t actually want to know the hows and whys of my poor, injured taste buds. I’d prefer to not know, and maybe just have someone commiserate with me and co-mourn the loss of flavor. Hmmmkay?
It’s just so random. Some things are BOOM! (cherry pomegranate juice, boo-ya), while other things are non-existent (ketchup, pumpkin cream cheese cake).
So back to food. I have been craving things the last few days, and I’m eating what I crave. Macaroni and cheese seems to be working for me, so I’m going to eat the heck out of it. Canned green beans? Delish. Burgers? Ok. A loaded salad? Yup. Pizza? Sign me up.
Are they all healthy? Nope.
Do I care? Nope.
Because in about two weeks, I’m most likely going to be right back where I was a week ago, not being able to eat or drink anything, and I’m sure as hell not going to be feeling ashamed for having eaten that burger, pizza, ice cream, etc. (that I could actually taste) while I could.
Do I eat fruits and vegetables? Lean proteins? Grains? The things I “should” be eating? Yes, I try. I love fruits and vegetables. I eat the heck out of them. Raw, cooked, frozen, canned, jarred, pureed, juiced, whatever. I love ’em and I eat ’em as much as I can. I also love meat, all kinds – white, red, and pink, from the land and from the sea. I’m an equal opportunity meat-eater. Grains are good, too, particularly rice. But, sadly, there are some of these key foods where the texture or flavor is so far off I just can’t do it.
So that’s that.
Chemo + food = not good times for Jen.
The ugly, ugly truth.