What’s New?

Not much going on here, but a lot going on at the same time…if that makes sense.

As far as this cycle goes, it’s been about the same as the last. Maybe, dare I say it, easier. I’m either use to this crap, or the still reduced dosage of Taxotere is making my life easier. Hot flashes, diarrhea, head fog, fatigue, etc.

I can eat (a.k.a. tolerate) pretty much anything I crave, though I’m avoiding potatoes in case I have those starchy texture issues again (don’t want to ruin a favorite food for myself), and fresh brewed sweet iced tea tastes like dirt. I know, I know, not the best food/drink choices. But considering how finicky my tastes have been throughout treatment, I eat what I crave so that I can actually eat. I like and I eat healthy foods, but I can’t force myself to eat what I don’t want at that moment. It’s probably definitely most likely at least 90% mental, and that’s ok. This whole experience has been about the mental and the physical, not just the physical.

I missed my first two classes last week, but I spoke to my professors beforehand and they were cool with me missing. I’m hoping I feel well enough to go to class Thursday (Monday’s class this week was canceled for the holiday) since I’m going to miss my Thursday class next week due to surgery (future post coming about that!).

Brad and I are supposed to be going to a concert tonight with this brother, which will be nice. There’s seating, it’s not just general admission, so I feel comfortable going and not getting jostled. We’ll just have to see if I’m feeling up to it. I sure hope so. It’s In This Moment, P.O.D., Ded, and New Years Day at the Performing Arts Center.

I think what makes me feel the worst these days is muscle soreness and shortness of breath. It’s from the fatigue. I get so tired after the chemo, I end up laying around and doing nothing. Then when I want to actually do something, my muscles are like, “Yeah right,” and my lungs are like, “Yup, walking from the bed to the couch is now considered high rate cardio, ya bum!” So once I’m able to start moving again, I have to move at a sloth’s pace and work my way up to a normal human speed.

So what’s next? Here’s a little bit of what I’ll be talking about the next few days: Surgery, Roy, Road Trip, Snow, and Moving Fun!

Peanut Butter is Kind of Cool

Why, you ask?

Because it kind of, sort of, almost (but not entirely) masks the metallic taste in my mouth the week after chemo.

So, one of the other side effects that irks the heck out of me is the metal mouth taste. It ruins the taste of food and is all together unpleasant.

I noticed the other day that when I’d eat Reese’s Puff cereal, don’t judge, the metal taste wasn’t as persistent. It was still there, but it was covered up a bit. So I proceeded to eat the heck out of the cereal. First, it tastes like it’s supposed to, and second, it kind of hid that metallic taste. Win, win.

Of course, I can’t whip out a bowl of Reese’s Puffs every time I want to get rid of that taste, and (unfortunately) it doesn’t really have a lasting effect on the metal mouth.

What’s the alternative? Peanut butter! Straight peanut butter. Right out of the jar, with a spoon. Yummo.

Again, it doesn’t eliminate the taste, but it masks it pretty well. And the straight peanut butter is thick enough that it lasts a bit longer than the Reese’s Puffs taste. It helps before bed, because there is nothing worse than trying to sleep with a metal taste in your mouth!!

And mouthwash, gum, Biotene, etc. does not help at all. If anything, mint makes it worse. So I do brush before bed, but after rinsing that mint taste out, I opt for the peanut butter chaser!

Hello darkness my old friend…

Let me start by saying I’m using that lyric in reference to the original song, not the remake. Mmmkay?

So yeah, it’s that part of the cycle again.

I feel cruddy. My body is sore, my throat is a little sore and tight, my head hurts, I’m tired, etc. Waa waa waa. I don’t want to read or write, so I’m just laying in my bed and occasionally listening to books on tape. I’m bored, but don’t really have enough strength or brain power to do anything productive, which sucks because there’s a lot I could be doing for school and around the house. I finally reconciled my bank account yesterday after about a week, that was fun. I hate falling behind.

I’m hungry, and so far I’ve been able to eat. I get nauseated, but that’s what the Zofran is for. I learned what I could tolerate last cycle, so we stocked up this time. I had Campbell’s chicken and dumpling soup yesterday, the kind in the plastic microwaveable bowl, and it was wonderful. Today I had oatmeal, this time the fruit and cream variety, not the plain cardboard type. It was good. Then I had macaroni and cheese for lunch – a Kraft microwaveable bowl. Not all the healthiest of selections, I know, but I’m managing with what I can. I had a sandwich yesterday with meat, veggies and avocados, so my system seems to be allowing some variety, I just don’t always have the umf to make it fresh. I can also tolerate water better this time around, more so than the Crystal Light that was my saving grace last time. It’s so weird how things flip and flop like that.

Things that are particularly annoying: sounds. Phone ringing, door bell, text tones, dog barking, etc. It’s making me quite irritable, which I’m sure is just pleasant given all my charming characteristics as of late.

Brad has been a real trooper. He’s always been super tolerant of me, but he should get an award after this, even though he’d deny deserving it. “Can you get me this?” “Never mind, not this, that.” “I realize you worked all week and weekend, but I want popsicles.” “I left my puzzle book in the other room.” “Has Daisy been outside?” “I want a popsicle, but a good flavor.” His personal assistant job description does include criteria about mind reading, FYI. And he does it all without whining about it AND giving me compliments, which I’m not so sure I’d manage if the roles were reversed. I’m tired from doing nothing, so I’m sure he’s exhausted.

So kudos to the cancer spouses, caregivers, parents, children, siblings, etc. Your job is hard, too. Really hard.

What else is new? Well, the diarrhea is back. That started around 1:00am last night and continued every couple hours throughout the night. It stopped around 11:00am, I think. Then happened once again since, but it at least seems to have slowed down. I’m taking in fluids and took Pepto, so hopefully we’re on the upside of that, though after last cycle it’s anybody’s guess. I’m doing my best to stay horizontal and not jostle anything.

I mentioned nausea…that’s been pretty persistent, and I wonder if it’s because I’m eating more and trying to be a little more active? The medicine helps, so I can’t complain, but it’s definitely more present this cycle than last.

My tastes haven’t completely become shot just yet, and I’ve been able to taste what I eat, but I do have that horrible taste in my mouth. Yuck. I need some peppermints, the red and white ones, you know? Those seem to help. (*cough*Brad*cough*) The blue and green ones are too close to mouthwash right now, and my gag reflex is ready!

Daisy has had enough of my boring self. She keeps looking at me and sighing these big huffy sighs. Like, “Come on, ma. Get up. Watch me roll on the floor. Watch me chew my foot. Watch me scratch.” She’s just not used to me being home and doesn’t know what to do with herself, or me.

Whoa is her.

But anyway, I’m on the flip side! I should be feeling pretty good by the weekend, so I’m looking forward.

Tomorrow I have labs, so we’ll see how I’m doing, and maybe if I’m feeling like garbage I’ll get some fluids while I’m there. Next Friday, the 27th, I have my six week echocardiogram to see how my heart is doing with all the poison. Then, after that, I’ll have an ultrasound of JP to see what’s happening there.

I think I’m going to crawl out of bed and get a popsicle. 🙃

Cycle Two Update 

I can’t remember if I mentioned that when I met with Dr YB before my chemo, we talked about my symptoms and side effects, and he recommended only taking half the prescription steroid I take the three days following chemo. The reason for this was because a) it seemed like several of my symptoms could be a direct result of the steroid, and b) not all people need the steroid.

So the question is, have I noticed much of a difference with that change? I’m less foggy, lightheaded, and fatigued. That’s been wonderful, because it has allowed me to be more active. I made dinner twice this week! Last cycle, I was horizontal.

As far as my digestive tract, it’s nearly identical to last cycle. I warded off potential nausea the night of/morning after chemo with the Zofran. I had one BM Tuesday night after chemo, nothing since. I have Mirolax to take tomorrow if things don’t happen in that department. We all know how I appreciate regularity in my life. Ha! I also have a lot of heartburn, Thursday in particular. I took some pepto, and later an over-the-counter heartburn medicine, with some relief, but not a lot. Tried to sleep in a reclined position to ward off discomfort. Worked a little, not a ton, especially when I was woken up by some jackass in a pickup truck with no muffler, messing around on the road behind my house. Thanks, dude. Appreciate it at midnight.

What else? Ah! After chemo on Tuesday, I napped for about two hours. After the first cycle, when I woke up every couple hours throughout the night, I decided I would allow myself a nap, damn Benadryl, but wouldn’t go to bed for the night until later, like 11:00pm. So that’s what I did. Or tried to do. But I never slept!!! I was up ALL. Night. Long. And Wednesday, I was functional on no sleep. I worked two sessions. Then I went for the Neulasta shot and the MA (same sweet gal I had last cycle for labs who got me fluids!!) told me it was the steroid drip I had the day before. That can disrupt your sleep. Yay…not. If there’s anything I like more than food, it’s sleep.

I slept fine Wednesday night. Woohoo!

Appetite has been fine, and I’ve been able to continue to drink water. By the end of the first week of my first chemo cycle, I was already having trouble drinking water because the taste was salty. I loaded up on juices and stuff this time around because I wanted to have an alternative to water in case that aversion comes back, and so far I prefer the water, which is great! I hope it lasts.

Dry skin on my hands. Annoying. The top layer of skin is cracking a little bit on the sides and knuckles and it just peels and peels and peels. I’m using lotion, but it doesn’t really seem preventable at this point since it’s already peeling. It’s annoying, but not causing discomfort or pain.

Less tingling this time around. I think the tingling was the hair follicles dying everywhere, so I’m guessing since they’re already dead, that’s not going to happen in the same way. Taxotere is no joke! That’s the chemo drug that generates all the excitement. It’s a pain in the butt, but it’s killing my cancer, so it’s a small price to pay!

So that pretty much sums it up so far. I feel like it’s been less eventful, but I haven’t hit that 7-10 day mark yet, and that will be the true test. That’s when the appetite left the building last cycle and I was probably less than pleasant to live with. Here’s hoping that water and me continue to get along, at the very least, and that some of the easy foods I purchased in anticipation of that part of the cycle work out!

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.