platter of tapas

Hungry, but Can’t Eat: Food Issues While Undergoing TCHP Chemo

I am absolutely starving.

Okay, not starving. I have weight to spare. But I am so motherfucking hungry I can barely put it into words.

After every chemo session (I’m done with 4 out of 6 at time of writing), there’s a window of 10–11 days where I can barely eat anything because it is physically painful to do so, and everything tastes disgusting or has no flavor at all. It’s a weird side effect I didn’t realize could happen before chemo, and it’s something that people who aren’t experiencing cancer treatments will never be able to comprehend. And thank God for that.

Let me try to explain it for you in hopes you never experience this awful feeling. And if you’re currently undergoing this regimen and reading this blog, I feel your pain. I am with you.

While on chemo, specifically the TCHP regimen, your tongue goes numb beginning the day after infusion. When you’re at the hospital, it’s ok to eat if you feel inclined. You can eat while undergoing infusions, but as the day progresses, you will start to feel less interested in eating.

One of the things this chemo regimen does is change the way food tastes, from flavors to textures. So by the time you get home from an infusion, you might be hard pressed to eat. After 2 of the 4 sessions I’ve had so far, I have eaten when I got home from chemo same day. It is very situation-dependent.

But by the next day, your tongue starts to feel funny. I’ve previously described the feeling like a sock on your tongue, and there’s no better way to put it.

Picture this:

You’ve put a tight sock on your tongue, but you need to eat. But every piece of food you place on your tongue feels like a foreign object. A flavorless object occupying space in your mouth. On top of that, there’s something stuck in your throat. It’s not food because you haven’t been able to get anything down. It’s another foreign object. Lodged there. You can’t move it. And even drinking water won’t help. Actually, drinking water might hurt. Because water is also disgusting.

That’s how eating feels for nearly two weeks after a chemo infusion.

Your throat feels full and like it’s burning, your tongue doesn’t work, and your stomach absolutely hates you.

Foods are too sweet. Too greasy. Too spicy. Too salty. Too sharp. Too rough.

Food smells amazing. But the taste? God awful. Avocados? Bitter. Ice cream? Like you licked the inside of a bag of sugar. Potatoes? Greasy, gross, vomit-inducing.

I tried making myself some pico de gallo about 5 days after my last infusion. I used one serrano pepper. They’re hot, but nothing I can’t normally stomach with ease. The minute one diced pepper touched my tongue, I started gagging hysterically and had to down a full bottle of water. Spice is intensified; sweet is nearly unbearable. All of it is horrible.

Because of my inability to eat, I drop about 10 pounds in body weight after each chemo session. I’m currently down 28 pounds since the start of infusions, with another five or so days to go until I can eat with normalcy after this session.

“That’s not 10 pounds! You’ve been through four sessions! You’d be down 40 otherwise!” Good job. I usually gain back about ~5 pounds the final week before the next treatment…because like magic, my tongue works again.

Some people on other chemo regimens have noted their insatiable hunger. I guess you could say I’m insatiably hungry, too – I just can’t act on it. Some chemos require you to take oral steroids as part of your treatment plan. I am on Dexamethasone (an oral steroid) the day before, day of, and day after chemo. But after those three days, I don’t take any steroids, so I don’t have this bottomless pit stomach feeling others have experienced.

The non-eating isn’t even the worst part!

On top of not being able to eat, you’re plagued with awful, debilitating fatigue. Because you can’t eat, your energy and hydration levels are at unhealthy lows. You’re exhausted. Your head hurts. You’re dizzy. You can barely stand up straight. Want to walk a flight of stairs? Fuhgeddaboudit. Everything takes so much fucking energy reserve and you have so little because you’re not eating. And you can’t even FORCE yourself to eat without possibly getting sick in the process.

Fun fact: Some people online have told me to just “suck it up and find something to eat!” like I wouldn’t have already tried that if I could. I detest vomiting, so anything I can do to prevent myself from throwing up is what I’ll do, but thanks anyway, internet advice-giver. P.s. I haven’t vomited once since on chemo and hopefully can make it through the rest without doing so.

There’s a mental aspect to it, too.

The mental toll of not being able to eat food is so much harder than I’d ever have thought. My mind is consumed with what I cannot eat. Days drag by because what might normally be considered “mental” breaks for meals just don’t happen. I’ve broken down crying at least once every window between chemos because I can smell and see food, but can’t taste or eat it.

For me, food is a part of life. So not being able to look forward to a hot meal at the end of the day or casually grab a donut and coffee for a fun and fast breakfast is so taxing on my mind. It might seem crazy, but our lives literally surround food. One of the many joys IN life IS food. Taking that joy away makes the days drag. Makes my emotional state so numb. So disinterested in everything.

You know how you might joke that you look forward to your morning coffee? I can’t even do that. I have barely consumed any caffeine since April because it’s too bitter or hard on my stomach. I would love to wake up and have a sweet roll. An egg sandwich. Log off work and go out for spontaneous sundaes or fraps at Starbucks.

But everything has to be so strategic, so deliberate. I’m already planning ahead what I can eat and when once these next few days are up.

So what do you do when you can’t eat?

I torture myself, naturally.

I spend way too much time on Instagram and TikTok watching cooking videos, dreaming about the food I can’t even dare to eat. Over the past few months, I’ve followed a couple of amazing chefs whose food I drool over for days on end:

I spam-send my boyfriend videos of mouthwatering food, continually telling him what dish I want to eat next. He tells me to make a list so we can remember after each chemo session. Lately, I’ve been on a Mexican food jag with some spicy Asian noodle dishes sprinkled in between. Pretty on par for what I normally want to eat, to be fair.

Somewhere toward 6–7 days after chemo (today, as it were), I start feeling more myself. I ate a banana and a mini bag of 100 calorie pretzels. A whopping ~250 calories or so for my day. But hey, it sure beats not eating anything. Sometimes I’ll get the urge to cook for my family, then immediately regret doing so as I can’t taste anything I’m cooking. Happened last night when I made one of my favorite go-to quick dishes, copycat Panda Express chow mein noodles.

By the end of the week, around 8–9 days post chemo, some taste starts coming back. It comes back rather gradually. Using the 1–10 scale for 10 being full-flavor, I hit about a 5/6 a week and a half out from infusion day. About 12–14 days post infusion, it shoots back up to about an 8 or 9. Then, for 7 glorious days, I can eat food.

Do you have food recommendations since we have to eat *something*?

Yes, but they vary per person. A few things that have worked for me are:

  • Plain or cinnamon apple oatmeal
  • Mac and cheese, depending how many days it had been since chemo
  • Strawberries
  • Bananas
  • Blueberries
  • Slim Fast shakes (not too sweet, lots of protein)
  • Plain pretzels
  • Peanut butter
  • Peanuts
  • Cheese, though it still tasted weird
  • Plain white rice
  • Plain rotisserie chicken, again, depending how far out from treatment

What foods do you recommend staying away from?

It varies per person, but here’s a quick list of things I wouldn’t dare touch during chemo + 10 days:

  • Fried foods – for the love of God, don’t do it
  • Anything spicy (even if you can handle the hot stuff like I normally can)
  • Meat, especially beef
  • Seafood
  • Coffee or caffeinated drinks
  • Alcohol
  • Candy, ice cream, pastries
  • Soda
  • Lemonade

When you can taste food again, what do you eat?

Anything and everything my body can handle. A few takeout/dine-in highlights over the course of chemos have been:

As you can see, I have a few food trends: Mexican food, nachos with brisket, Chinese food, and wings of various sorts. And as spicy as I can handle it on good days.

What sucks is because I have to eat so little over the first 10 days, I can’t eat as much as I’d like on the days thereafter. A few times I’ve pushed it, but usually I have more food than I can handle, which results in leftovers I might not necessarily finish.

Closing thoughts

Anyway, this ode-of-sorts to food is a way for me to reach out to fellow people undergoing TCHP to say: you’re not alone. This part is fucking horrible. I’ve never experienced a worse feeling. Some people might try to compare not being able to taste foods when their nose is stuffed up or when they have a cold or the flu, but I promise you – nothing is similar to this.

Please try to eat something small so you can stop feeling like utter shit. I can barely move or function on the days I can’t get anything down, so please try your best. Forcing water and taking your anti-nausea meds might be your best bet. So far bananas, strawberries, and other berries have been my saving grace.

And for anyone else just reading along, thank you for listening to me bitch about how hungry I am and how awful this side effect is. Next time you’re around someone undergoing chemo, ask them how they’re feeling food-wise. If it’s a good day, offer to buy them lunch! ♡

Chemo Hair Loss

Figured now was as good a time as any to share this news…

After my last chemo, I started shedding a LOT of hair despite using the DigniCap scalp cooling system. What’s more, I developed a huge bald spot at the front of my hairline, and I got so frustrated that I had my mom cut all of my hair off in early May.

With my third chemo coming up tomorrow, I figured I should finally share what my hair looks like now. It’s not great, but it’s what I have for now.

I will continue using the DigniCap scalp cooling because despite developing a bald spot at the front and shedding a ton of hair, I so far have not developed additional bald spots. My hair mean(s/t) the world to me. It was absolutely beyond devastating to have to make this decision.

I am not happy that this had to happen. But without DigniCap, I would be completely bald right now otherwise. And I know this for a fact. So I’m extremely grateful to have the hair coverage I still do currently. I am also extremely blessed to still have my eyebrows and eyelashes as well as a mostly full head of hair, even if it is super duper short right now.

I’ve NEVER had hair this short in my life, so this was a complete change for me. I am so worried about the next four treatments. I have no idea how I’ll fare, if I’ll lose more hair, if I’ll lose my eyebrows or lashes, or what more is going to happen. Every new round of chemo is an absolute shitshow of “what else could go wrong this time?”.

All I can do is pray, hope for the best, and lean on all of you for your continued support. I can’t wait for time to pass to get healthy and have a full head of hair back in the future.

Anyway, just wanted to share that with all of you to rip the bandage off and so you’re not all shocked when I share pics from the next chemo session.

short hair
Short hair, do care

Chemo Chronicles

This outlines my first chemo, April 15th, 2021 and the weeks after (leading up to chemo 2).

Please note: If you are squeamish to hear about bodily functions, side effects, and other not-so-pretty parts of cancer – one, why are you here? – but two, stop reading right now – because I’m not sugar-coating anything for people who really want to know the ins and outs.

Day of infusion (at hospital):

The day of infusion was fine. Because I have a port-a-cath where the infusions are given (as opposed to intravenously), I didn’t have any site pain. I was there a long time. 7:20 a.m. until 6:45 p.m. It was the longest day for me due to my chemotherapy and HER2+ medications regimen: TCHP (taxotere, carboplatin, herceptin, perjeta).

I also was doing a cold cap, by DigniCap, which is a cooling cap system with intent to help cancer patients mitigate or prevent hair loss (with a 50% rate of keeping your hair deemed “successful”). This process adds an additional 2–3 hours of total time onto the infusion session as your head needs to be kept cold before, during, and after the chemo drugs are placed in your body.

My mom came with me (I can have 1 guest, masks on) and we watched TV, talked, ate, etc. It was nice to have her there with me so I wasn’t alone. I also went online sporadically, but didn’t do any work. You should not be working through your chemo – don’t let anyone tell you otherwise.

Day of infusion (at home):

When I got home, I didn’t really want to eat although there was a nicely-prepared dinner waiting for me, thanks to my dad. I ate some mashed potatoes and salad, drank some water, and that was it.

Day after infusion:

The next morning, I felt awful. It felt like there was a clump of food in my throat (despite only having eaten salad and a bite or two of mashed potatoes). This feeling endured for nearly a week. I tried to eat normal food and I just couldn’t.

There was a lump in my throat, like constant acid indigestion or reflux. I have a super high tolerance for spicy foods (thanks, Mexican genes!), but even black pepper was irritating as hell on my throat. So for days, all I could eat was soft foods. Jello. Apple sauce. Pudding. Oatmeal. For a week. And some days, nothing at all, or just water.

They really like to force you to drink electrolyte-rich liquids, like Gatorade. But Gatorade tastes like pure fucking salt when you’re in the midst of chemo. It was awful. I fucking hate Gatorade now.

Another thing I noticed was the awful sensation on my tongue. Something was wrong. It felt like there was a sock or a glove on my tongue and I couldn’t taste anything.

Week after infusion:

The first Monday after chemo was an absolute BITCH. I could not keep myself awake for the life of me. I was so lethargic and literally kept falling asleep at my desk. Learning this, I decided to take off subsequent Mondays-after-chemo going forward to recover (my infusions are Thursdays, with days off on Fridays & Mondays from work).

About two days post-first chemo, I started getting a super hoarse throat. I could barely speak. I drank various teas, had lozenges, drank tons of water, didn’t talk or sing much. About 7–8 days after, it got better and cleared up.

By the end of the first week (7 days), I had a check-in appointment with the “chemo teacher,” who basically was just there to check in with me and make sure I was doing ok. After looking at me and seeing I looked in good spirits, she basically was like “you’re good, see ya!” which was fine with me because I FELT fine at that moment.

Other than severe dehydration from diarrhea – yes, it’s wonderful – I was doing ok all things considered. My tongue was super dry (as she noted) and she just mentioned to up the hydration. Noted.

After one week, I:

  • Had all my hair intact, even after my first hair wash (shower every day; wash hair 1x/week)
  • Had lost 9 lbs due to lack of eating and dehydration
  • Was experiencing acid reflux/indigestion every single day
  • Had diarrhea every single day
  • Could not taste anything at all – no foods had any flavor and my tongue felt weird as fuck
  • Started getting a weird skin rash on my face (cheeks, forehead, chin) which I didn’t think to bring up to her because I’m an idiot!

2 weeks after infusion:

The week following chemo was a lot better than the last, though my tongue and the flavors of foods was still not completely there. However, I was finally able to stomach whole foods, like rice, chicken, etc. There were still some foods that tasted awful to me even though they shouldn’t have – carne asada (oh, the horror) and tomato sauce (think pizza). Carne asada tasted sour, and tomato sauce tasted bitter. Two of my favorite things. It was shit.

Very early on, as I alluded before, I started noticing a rash on my skin. I tried ignoring it because I thought I was overreacting or something, so I went on with life as usual.

Until it started getting worse – fast.

skin rash from chemo
This photo was taken Sunday, 04/24/21 after I ignored the skin sensation for days…

It started getting out of control. I was like, is this was cystic acne is like? No, really, it got bad, and I’ve never had “bad” acne before, so I couldn’t compare it to anything else. I figured ok, I’ll put some topical medicine, put some cold ice packs, it’ll be fine.

Narrator: it was not fine.

Two days later it was a nice, sunny, 85-degree April day in Chicago, and I decided to work outside in the afternoon with my cat. Already having been told to avoid the sun, I stayed under the backyard umbrella and had plenty of water with me.

If you can recall, I’m still doing cold caps at this point, meaning I can’t put my very heavy, very thick, ass-length hair up on my head during the super hot summer like I’m used to. So I just have to sit pretty and hope that I don’t broil to death, even out of the sun, under an umbrella.

I finally emailed the chemo teacher on the medical portal. She never replied. Very efficient! So I decided to email my nurse navigator, who’s an absolute fucking saint. Immediately after I emailed her a series of pictures – including these, which got WORSE when I was outside in the heat, magically – she called me within 3 minutes to be like, “Hey friend, that’s not normal!!!”

NOW we were getting somewhere.

What’s not normal, you ask? Oh, just this:

chemo rash
Tuesday, 04/26/21, after sitting under an umbrella in the heat for ~2 hours.

So my nurse navigator rapid-fire called my oncologist who got in touch with me immediately and told me it was an INFECTION, not some random chemo skin rash! So turns out I wasn’t crazy, but that this also wasn’t “normal” either. Some skin irritation is possible with chemo. BUT THIS IS NOT NORMAL. SO IF IT’S HAPPENING TO YOU, REACH OUT ASAP.

To remedy it, they prescribed me Clindamycin (pills) for a week – an antibiotic. As it stands, the skin cleared up within the week and it was back to normal, supple, non-bumpy-what-have-yous for me. Just the regular 20-something year old acne flare-up here and there.

I was also given a topical Clindamycin cream in case of any flare-ups. Fingers crossed, but so far, so good.

The rest of this week was generally uneventful, which is pretty great if you ask me. I was able to start eating full meals again, but I screwed myself out of having any alcohol (which you can totally do when you’re on chemo, fun fact!)…so long as you’re not on antibiotics at the same time!

After 2 weeks, I:

  • Had not lost additional hair even after washing it a second time
  • Was able to eat with more normalcy
  • Had discovered and been given a solution to the skin infection
  • Was not having diarrhea every day for once

3 weeks after infusion (days before 2nd infusion):

Just as you start to feel good again, you get ready to feel like shit all over. Once you’re like “damn, I feel solid,” next thing you know, chemo’s just around the corner. So this week I tried to live it up. Was able to eat whatever. Tried to dress a little nicer, more like myself.

I did, unfortunately, notice some hair coming out. As a reminder: I hadn’t lost basically any hair to this point, over 2 weeks into the process.

So I posted on the DigniCap Facebook support group and got generally positive responses, basically saying what I was losing wasn’t much to shudder at. So I assumed they were right and just tried to live and let live. But day after day more started coming out – in droves. It was getting bad. Really bad. Balding bad.

On an unrelated note, I have very kind people in my circle, so someone at work (on a different team than mine) bought my lunch the day before chemo started (May 5th) up again. I ordered Panda Express, chow mein and kung pao chicken. One of the best fucking meals I’ve had in awhile. Can’t wait to eat some again before the next session!

That same day, of course, was Cinco de Mayo. While it doesn’t have a particular significance to most Mexicans like me, it was an excuse to indulge on good ass food before I couldn’t eat again. So we ordered from one of my favorite local spots. Got nachos, tacos, the works. It was good to fully eat and taste every last bite.

After 2.5 weeks, I:

  • Could eat like normal and taste foods up to 90% of normalcy
  • Tolerate more spice than before
  • Had a clear face thanks to the Clindamycin
  • Began losing a lot of hair, tons of shedding, and a bald spot began forming right at the center of my head

That’s it for now.