Chemo and Food: My Ugly Truth

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.

Why?

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.

Oh, Crystal Light, how you’ve saved me!

Water has been a struggle. 

It started with a metallic taste, which I partially attributed to my metal thermal cup, but I know is also mostly due to the chemo drugs.

Then, after I changed bottles, it was the flavor. It just tasted weird. Glass or plastic, it didn’t matter.

So Brad made me cucumber water. That lasted for one whole day until I got sick of it. 

Powerade and Gatorade were also out of the question due to flavor issues. I even tried a strawberry watermelon Crystal Light and various lemonades. Soda was too much and tea was ok, but limited due to the caffeine.

So how the heck am I going to take in all these fluids I’m supposed to?

I finally made a different Crystal Light drink and voila! I’ve already drank three glasses in a period of a few hours. May not seem like much of a feat, but when I was literally having maybe three glasses ALL day, having three glasses in three hours is amazing.

So, thank you Crystal Light, for your cherry pomegranate drink mix. It is seriously the first beverage that has penetrated my broke ass taste buds!! 

Blood Counts Are In…

…and they’re good!

The Neulasta did (or is still doing) its job and my blood cell counts are high. Good news!

I went in today for that, and ended up staying for some IV fluids. I wasn’t fully dehydrated, just mildly so, and the fluids would make me feel better, so I signed myself up. 


I was able to eat a little more after that, then had a protein shake (brilliant suggestion by Nurse R at the oncologist), took a nap, and then had enough energy to go to class. Of course, I was exhausted by that point, but I feel like I finally had a productive day. 

Of course, I wasn’t able to work yesterday or today, and that sucks. I’m hoping I’ll wake up in the morning feeling rejuvenated enough to make my sessions. I hate not having the energy or stamina to do the things I used to do, and I hope this will pass with this part of the cycle. I think (hope!!!) today’s improvements were a step in the right direction. 

So next up, aside from my usual random ramblings, is the port placement on October 3rd. I’ll be so glad once that’s done! (Never thought I’d say those words, ha, but I’m over being poked and prodded.)

Week One Summary

It’s the end of week one, and it has been quite a week. It wasn’t horrible, but it was uncomfortable, mostly due to all the unknown. No matter how many side effects you’re warned about, books you read, and experiences you hear about, it’s impossible to prepare for chemotherapy and what follows. 

Highlights:

  • Mouth issues – skewed tastes, salty and sweet bad, bland good, metallic taste, sore tongue and throat
  • Body aches – no fever, light soreness, all-around bone aches, even my skin felt sore, headaches
  • Scalp – tingly and sore, hair feels rougher in texture 
  • Hearing – sensitive to sound, everything seems louder, including the fly that is buzzing around at the moment
  • Digestive – stomach upset, nausea, diarrhea, constipation, gas, empty stomach, hunger, cravings
  • Fatigue – tired, sleepy, lightheaded, unable to concentrate, foggy 
  • Eyes – dry eyes, hard to see
  • Smell – hyper sensitive to smells, particularly sweet

Granted, these symptoms have been sporadic. If I’d been experiencing all at once, I’d have been freaking out. Usually it’s no more than one or two at a time and I do have remedies for most of them, and have called the doctor when I was unsure. 

Considering the chemo is kicking cellular ass inside my body, good and evil, it could be worse. I could feel worse. The most persistent symptom has been fatigue, and I know that’s because my body is working overtime, using its energy reserves to rebuild cells. I’ll accept the exhaustion.

So there have been audiobooks and games of solitaire on my phone. That’s about all my brain can compute. I did go to class Thursday night and that was interesting. Fingers crossed that next week will be better! But, of course, “they” say a week after chemo is when you can expect to feel bad. We’ll see what happens there. 

A point of contention between me and Brad has been my hydration. I’m admittedly not taking in as much fluid as I should be. I know this is bad, and I am trying, but it’s hard when even water tastes bad. It has to be in the right cup and the right temperature or else it’s gross. 

Now, keep in mind I should be drinking an insane amount of water, like 80 oz, and I’m drinking maybe 50-60. So it’s not like I’m having a glass and calling it quits, I am trying. It’s just hard to force feed myself water. Blech!

So my super husband made me cucumber water, and it’s delicious. This was after he took my bland grocery list to the store and bought me saltines (salted and unsalted, since we didn’t know what I’d like), beans, tortillas, soup, potatoes, and white bread. He’s been a good sidekick.

I do still have an appetite. No surprise there, right? Unfortunately, it’s a lot more sensitive than before. I have to eat much smaller meals, and I’m almost always hungry because I never quite fill myself up. If my stomach gets empty, or feels empty, it’s like I have to start from scratch to not upset it. If I eat too much or too fast, I feel bloated and gross. 

So this morning I had some vanilla Greek yogurt, and the first bite on an empty stomach sent me to the bathroom. I had to eat it super slow, and super small baby bites. I added an egg (separately, on a plate, ew), and continued with the baby bites. It worked.

The truth is, this entire thing is (and probably will remain) a work in progress. I have to basically relearn everything according to the new me. And that’s ok. If it makes me healthy in the end, then that’s ok. I’ll deal with it. It’s not going to be fun, but I’ll find the humor when I can. 

That’s all I’ve got for now. 🙂

All I wanted was a cup of hot tea!

When I’m super tired, I crash early, then wake early. Not fun. I love to sleep in, and can’t seem to. 

Anyway, this occurred last night, while I was all backed up. Hooray. So all I wanted was some yummy warm tea, because it would provide much needed hydration and could help with my stomach woes. I got this great ginger lemon tea when we went to Jamaica, and thought this was the perfect opportunity. 

Pictured above, is the first attempt at hot tea. Seriously, what is my cup doing? I put the water in and tucked it into the microwave, then voila! The mug bleeds brown sticky crap. What is that?!

Moving on…I attempt a second cup, and the tea bag explodes into the water, spreading ginger chunks and leaves throughout the cup. 

Super.

Eventually, I got it right, after taking a good thirty minute break on the couch with an audiobook and spider solitaire.

And………It worked! I am free and clear, digestively. 😉 Woohoo!!

Today was a bad day.

No, it wasn’t the worst by far, I’m sure. But it sucked. 

My tongue feels like it’s burnt, like I ate or drink something too hot, if that makes sense? And it seems to have skewed my tastes a bit, particularly with sweet things. I had some soup, and that was OK, but when I tried to drink a Powerade, eat grapes and fruit snacks…no bueno. They tasted horrible. I spit them out. I’m not supposed to eat a lot of sweets anyway during chemo because the sugar/carbs/whatever can cause fungal infections. (Yay!) So it’s not a big problem, probably a good way for me to avoid the sweets, but I wasn’t expecting it, so I couldn’t eat the snacks I brought to work today, and was hangry by the end of the day. And it was a long day because I had class. So waa waa waa. 

I’ve also had some nausea and heartburn throughout the day, and of course, constipation. Because why not? I boast about regularity, and voila! Irregular. So that sucks. The trio of doom are probably all tied together, and hopefully the situation will be rectified soon. 

Other than that, more tiredness. Not quite fatigued. Still a little bit of that buzzed feeling that’s a result of the steroid, I’ve learned. So since today was the last dose of that this cycle, hopefully tomorrow will be a better day. 

My long days, the 8:30am-6:30pm days, are going to be a challenge. I’m going to have to see how that goes over the next week or so, because my focus is pretty much shot by 5:00pm. And that was today with only working 12:00-3:00, and then having class from 4:00pm-6:15pm. Not even a full day! Yikes. 

Anyway, while I’m experiencing a high dose of “feeling sorry for myself” today, I’m still trying to stay positive. The side effects I could be experiencing could be much worse. So there’s that. 

Chemo Brain – Is that even a thing?

I’m doing pretty well. I haven’t had any really bad side effects beside some stomach cramping, which I took Pepto for. The stomach cramping would have most likely led to diarrhea, and seeing as though I was driving to work (a session with a kid), it wasn’t exactly the most ideal time to be experiencing that. So, yeah…

(For anyone who is keeping track, it’s been 30 hours since my last BM…I’m not happy about that, but it’s better than having the runs. At least to me, at this moment. And now that I’ve written that out, I just know my doctor is going to yell at me for not telling him I haven’t had a BM in 30 hours. Ugh.)

Anyway, the only thing that’s been pretty persistent is tiredness. I would love to nap, all the time, but because I’d also love to sleep through the night, I’m trying to last until 9:00 or 10:00. When I went to bed at 10:00, I wake up every couple hours and am restless throughout the night. Not fun. But I know I need my rest, so I’m trying to be flexible and fit in naps after work when I can.

Today, I feel like I’ve been hit by chemo brain. I seriously haven’t looked it up, so I don’t know if it’s a real thing or not, but I imagine I’m not the only chemo patient out there who has experienced it. To best describe it – it’s like I’m buzzed. Not drunk. I’m still alert and capable, but I’m a little spacey, sort of feeling good, but it’s just not the right time to feel buzzed. Almost like a fog…

Today, I wrote down an August date…twice. I caught myself and fixed it, but still. Oh! And typos, lots of typos, too. Thank goodness for auto-correct and spell check! I had to add a note to my professor for my assignment submission today because I read and re-read it, and it looks and sounds OK, but who knows? I’m apparently not the best judge of anything today.

So yeah…chemo brain. I hope this isn’t an ongoing thing. It arrived on Wednesday morning, 2 days post-chemo and 1 day post-Neulasta. We’ll see how long it lasts…

Hehe, and seeing Neulasta typed makes me think of Nutella… See what I mean? It’s just not normal.

Chemo Cycle Day Two: Neulasta Injection

First, an update on how I’m feeling after the first day of chemo. I feel good. I’m tired, but I haven’t yet experienced any of the side effects. I know some of that is still to come (possibly) in 7-10 days, but for now I feel good. 

And a shout-out to Nurse L, who did my IV and ran my chemo for me yesterday. After 8 hours being juiced up, I expected at least a little bruising, but nada! Can you spot the entry point for the IV?


Check it out!


Pretty awesome! Next time, I’ll have the port and it’ll all go through there. 

I could have fallen asleep last night at 8:00pm, but decided to stay up so I wouldn’t wake up throughout the night. So I went to bed at 10, and still woke up at midnight, 3:00, 5:00, etc. But I felt good this morning anyway. I had some stomach cramping, felt sort of like gas pains, and took Pepto to ward that off. Success! Took some more after lunch just to be safe. I have Imodium as well, but I don’t take those until things get, ahem, loose, so I will do my best to avoid getting to that point. Plus, I swear by Pepto. The cherry chewables, even store brand, ah-mazing. Appetite is fine, stayed crazy hydrated all day, good to go!

So the Neulasta shot is what is supposed to work my immune system, lifting the white cell count, which will be measured next Tuesday morning. Hopefully the Neulasta will do its thing. 

This was a quick shot. I was at the office for about 30 minutes total, and the shot (into the fatty part of my arm) took less than 5 minutes. It was a shame I had to miss class for that, but it had to be done 24 hours after completion of the chemo and that was smack in the middle of Objective Assessment. But I did have a friend drop by to say hi while I was there, so all was not lost! Thanks, Andi!

Side effects to expect is soreness in my long bones, like upper arms and upper legs, and back…where the bone marrow is at. This is the reason I’m taking the Claritin, apparently it provides some relief to this symptom! Who knew?

And a little crappy humor for you…courtesy of my sister generating a meme from something I said via text after a compelling conversation about my bowels. 

Full Day 1 Chemo Update

What a long day!! Eight hours, ugh. The recliner was comfy, the company amusing, and the view pretty. The West Ashley location is very nice, but I’ll probably be switching to the Trident place since it’s closer to home.


No, didn’t see an alligator, but may have seen a snake.

Moving on.

After the stuff I posted previously, I had more stuff! Lots more stuff. The first was dripped for 90 minutes, then a break for 30 minutes. Next was about 45 minutes of premeds (steroid, Benadryl, anti-nausea, etc.), then finally the actual chemo drugs (the morning stuff were hormones). 


The IV in the arm was weird and uncomfortable at times, but mostly because I have a hard time sitting still so I keep bumping it. I didn’t really feel anything when the meds went in. I did feel a coolness when they did the saline flush between drugs. I was free to use the restroom, eat, walk around. I did a little bit of everything, particularly eat. 

We also played a game of Phase 10, which I won! 


Brad picked up lunch for us from DD Peckers at noon, it was good. I had some kind of Cajun chicken sandwich, he had a cheesesteak. 

I did get exhausted, too exhausted to read at some points, due to the Benadryl. I was able to nap for a few minutes here and there, but it’s hard for me to sleep with the noises (machines beep when bags need changing, or errors), and in the position I was in. My back and neck are going to hate me tomorrow. HATE. 

The temperature of the room was pretty nice. I did pull out my watermelon socks (which got a lot of compliments) and blanket at one point, but by the afternoon I was warmer. 

So the side effects are pretty overwhelming! Just imagine those commercials you see for cold medicine or something, then you know how at the end they add all those things that the drug can cause? Jeez. I’m glad I have it all on a sheet because I would not remember all that. 

I have to stay hydrated. It’s likely I’ll have diarrhea (sorry, but sh*t happens), and nausea. I have anti-nausea meds, and the nurse recommended Imodium for the upset tum. The rest of the potential side effects are ridonkulous, so I won’t list them all here, but in a previous post I linked the drugs I’m getting with some kind of drug fact info sheet. The “bad days” are usually the 7th to 10th days after chemo, so early next week we’ll see how I feel. Right now I feel slightly bloated and exhausted. 

My hair is probably going to be making a departure in about 3 weeks. I’ll save that for another post (The Pros of Losing My Hair, because silver lining, people!).

Chemo Day 1 is in the books!

Coming at you LIVE from Chemo Day 1

Kidding, I’m not live live. I’m just sitting in my comfy recliner, hooked up to the drugs, and hanging out with hubs.


So the first thing will drip in over 60 minutes, then I’ll get a 60 minute break. Then the next, and the next, and so on. I’ll be here about 8 hours today. 

My chemo bag is packed! It’s really cute, too. Kindle, paperbacks, computer, iPad, games, blanket, etc. Plus, we’ve got a cooler with snacks. Yay. 


Brad’s been a real trooper…getting me this and that, and sitting in an uncomfortable folding chair for the entire day. 

Since I don’t have a port yet, I’m getting the chemo through a vein in my arm. The port placement is scheduled for October 3rd, which will be before my next chemo treatment.


So I’m going to start reading my book, now, Ghosted by JM Darhower. I’ll post a full day recap later tonight or tomorrow!