I’ve cried twice…

I’m not a big crier. If I cry it’s from laughter, a tear-jerker movie or book, or because someone died. I never really cry over myself or my emotions. I probably did when I was younger, but as I’ve gotten older I think I’ve directed more of that particular emotional energy towards writing or have gotten angry instead (not the best outlet, I know).

Since I’ve been diagnosed with cancer, I’ve cried twice, and neither were directly related to the cancer.

I got into a car accident in July of 2015, I was deemed to be the one at fault, and in October of last year, I was served with two law suits by the other two people in the accident. It has since been resolved by my insurance, and I only had a few days of panic before I spoke with my insurance company and they said they’d take care of it, but that moment that I opened the envelope and saw what it was, I was like, really? I had apparently reached a breaking point because I cried.

The second time was today. I had my follow up with the surgeons. Nothing huge to report, except for me apparently. If I gain any more weight, I won’t be able to have the surgery. Super. I tried really hard to lose weight since my last appointment. I exercised, ate better, tracked what I did and ate so I could really see the difference…then I got sick with bronchitis and couldn’t do much for about a week and a half, so despite the fact that I’d lost about eight pounds those first two weeks, I didn’t lose anything the weeks following, and in fact gained some back. I’d gotten into the routine of yoga, biking and walking, then had to quit because I couldn’t breathe, and haven’t picked it back up enough to make a difference.

So here I am. Feeling totally and completely sorry about myself (not for myself, since I’ve done this to myself). I feel like a failure, which I definitely don’t like. I expect more from myself and hold myself to high standards, and while I know my weight has always been an issue, it hasn’t exactly been a major, in-your-face problem, until today. That was a hard pill to swallow, and I had several moments of self-pity over it.

I’ve joined a healthy challenge group led by someone I respect and admire, so I’m hoping to learn some things so I can make significant changes in the next month. I can do it, I know that I can, I just need to really focus. I need to exercise and to not quit. I need accountability. Hopefully I’ll get all that from this group I’ve joined.

Hot Flashes Suck

One second I’m cold, the next I’m hot. One minute I’m comfortable, the next I’m crawling out of my skin.

Hot flashes might be one of the most annoying chemo side effects.

Why? Why is something that seems so non-evasive in comparison to other side effects so obnoxious?!

Well, for one, because they happen all. the. time. All the time. Day, night, awake, asleep, home, out, etc. All. The. Damn. Time. And the lovely weather here in South Carolina isn’t freaking helping. The temperatures fluctuate between 50 and 70, day and night.

Should we have the heat on? The AC? Nothing? Fans? Blankets? What thickness of blanket? Sleep pants, a night shirt, shorts? It’s so uncomfortable! What I think will work might work for about 20 minutes, then I need a complete readjustment. Then by the time I’m comfortable again, my stupid internal temperature shifts and I need something else. But it’s like I don’t have the hot flash until I’ve adjusted myself, until it can be considered inconvenient. “Oh what perfect timing for a hot flash!” said no one ever.

So yeah…layers. Lots and lots of layers. Day clothes, pajamas, and even bed sheets. Everything must come in layers.

I Need a Mental Health Day

Before cancer, I used to take for granted the ability to do what I wanted, when I wanted to do it. If I wanted to go window shop at a store, I could go any day, any time, as long as the store was open. Yeah, I had to shower and get dressed if it were one of my lazy days, but that was a small price to pay.

Nowadays, 90% of my time is spent feeling some degree of crappiness.

About 100% of the time, I have to be conscious of where bathrooms are in case I need to make a run for it due to my wonderful digestive tract and its inability to be regular. In addition to that, I want to surround myself with people I feel comfortable enough with to make that mad dash, if need be. It’s one thing talking about it candidly here, it’s a total other thing being in public, making that face, grabbing my stomach with my eyes darting like mad for the nearest restroom, and praying for a vacancy as I run like I’m being chased by a bear.

Other times, I feel foggy and fatigued. My brain doesn’t quite want to work properly, and I lose track of conversations I’m an active participant in. Even when writing these posts, it takes me a while. I write a little, re-read to see if what I wrote makes sense, lose my train of thought and wonder where I was going with whatever I was writing, and so on.

Sometimes I feel nauseated. Granted, it doesn’t last long thanks to the magic of Zofran, but it’s still there often enough and isn’t a comfortable feeling. Along those same lines is the lack of appetite/need to eat everything in sight – all at the same time. Imagine how fun that is for someone who likes to eat. I want to eat, but I can’t really eat, partly due to nausea, partly due to not being able to taste things properly, and partly because it exits almost as quickly as it enters and there’s just no fun in that. But if I don’t eat, then I get nauseated from the empty stomach. Damned if I do, damned if I don’t. This last cycle was better with food, and I think that was mostly due to the fact that I was on point with my Zofran consumption. Every. Eight. Hours. Things still tasted sort of funny or different at times, some textures were odd, but I could eat.

With all that being said…I don’t want to do anything.

Yeah, I go to work and school when I feel well enough. But usually, even on good days, I’m too fatigued to do anything else afterwards, even grocery shop or clean the house. The regular household stuff typically gets taken care of on the weekend when I have more steam. Brad takes care of some of it, but I have a need to contribute, so I do it when I can. I like doing laundry and vacuuming, straightening up the house, etc. I enjoy it because it’s normal, and I try to do what’s normal as much as I can because I’m not a complete invalid. Sure, there are days when I don’t get out of bed except for getting something to eat and using the bathroom. Visit me during week two of my chemo cycle and you’ll most likely witness that. But when I have the energy, I’m up cleaning or organizing something because that’s normal to me.

But leisure activities? Those barely even happen for me.

We go to trivia on Friday nights – mostly because it gives me the chance to see my parents outside of them chauffeuring me to doctors appointments, it’s completely no frills, and it’s entertaining and a chance to exercise my brain. I went to a book event a few weeks ago – I was miserable but it was nice to get out, be a nerd, see people I hadn’t seen in a while, and meet people I hadn’t yet met in person. Went to a dinner for Brad’s work because free food, ok? Spent time with my family over Thanksgiving. We actually realized it was the first time our entire immediate family was all together, ever, which was pretty cool as someone was always missing for one reason or another. I trick-or-treated with my niece and nephew, sister- and brother-in-law on Halloween. Hosted a couple of games at home this football season.

And that’s about it. That’s pretty much the extent of my leisurely activities.

I often can’t do anything because I don’t feel well, or I don’t want to because I’m tired and would rather stay home so I’m not the tired, little fuddy-duddy in the corner not talking to anyone. I often can’t keep up with conversations as I’m suddenly staring into space and not paying attention right in the middle of a sentence.

Awkward…

So I need a mental health day. A moment to feel sorry for myself because this cancer crap is for the birds. It doesn’t just affect your health, it affects your entire existence.

Can’t do this.
Can’t do that.
Finally feel well enough to do that, but you can’t because of this, that, or the other thing.
Feel like crap because you’re constantly saying “no, sorry, I can’t, not today, I don’t feel good” when asked to do stuff.
Getting used to that metaphorical perch in the window where you wave good-bye to everyone who gets to do fun stuff and live their lives while you’re at home, physically feeling like some form of garbage.

Pity party, table of one.

I really shouldn’t be whining. Other people have it far worse than I do. In a year, this will all be nothing but a bad memory. Some people have to live with whatever ails them all their lives.

But, damn it, today I need to whine.

I think I’m coming off the high of having had two good weeks this cycle (since I pushed chemo back for Thanksgiving), and getting ready for the doom and gloom that is chemo day – Monday.

Anyway…I’m going to curl up on the couch with a book (an audiobook because I can’t friggin’ read a book to save my life these days) and eat my pizza and cinnamon bread. Tomorrow is a new day, and I think I might put up my Christmas decorations.

Bronchitis?!

As if I need more medical excitement in my life.

So yeah, my cold-like symptoms have persisted and yesterday Brad called the oncologist for me (I had completely lost my voice) to see what I could take to alleviate the coughing, congestion, etc. They said it sounded viral, and recommended I call my primary care doc. So I went to the nearby Roper St. Francis Express Care (a super nice doc-in-a-box type place that is also networked with my oncologist-added bonus is that it’s like 2 minutes from my house).

So now I have cough syrup and an antibiotic to add to my medicine cabinet. The antibiotic is sort of preventative. Bronchitis is viral, so an antibiotic is typically not needed, but I’m a special case and we take added measures.

Oh yeah, and when I went for my CBC blood draw on Monday, everything was fine (why we knew none of the sick stuff was due to an infection). Since I was feeling pretty blah and not getting a lot of fluids in me from being sick and having diarrhea, I got some fluids while I was there.

So yeah…coughing, no voice, still have that horrible post-chemo taste in my mouth (and I’m salivating like crazy, which is just great with that taste!), I’m doing fabulously!

It’s also raining outside, which sounds wonderful. I love to listen to the rain.

So I’m hoping I feel well enough to go to class tonight, but we’ll see. I can’t take the cough medicine and drive, so there’s that. I also can’t speak…

Saturday I’m heading to Columbia for a book signing! I’m super excited since I couldn’t go to the one last weekend, so I’m hoping I feel at least 80%! We’re just planning to go for the day, which is no big deal since it’s only a little over an hour away.

What else is new? Nothing really that I can think of. I’ve been binge watching Sex and the City on Amazon Prime video. I also joined Passionflix, a Netflix type service that’s making some romance novels into movies! I watched Hollywood Dirt, Which was written by Alessandra Torre, and Afterburn Aftershock, which was written by Sylvia Day. Well, the books were written by them, not the movies. They were pretty good! I read Hollywood Dirt, and the movie was pretty true to the book. I haven’t read Sylvia Day, so I don’t know how well it translated. Anyway, the service offers one new book to movie a month, and there are some more good ones in the works! There is also a small library of some other romance movies available to watch while you wait for the new releases.

I’ve also been playing a heck of a lot of Song Pop 2. A heck of a lot.

The first few sick days I’ve had to take off were kind of nice, like a little vacation from reality, but I was still sick so it wasn’t exactly fun. But now I’m feeling the ants in my pants start to dance. Boooored. I’m probably going to take a nap so I don’t have to taste this awful taste in my mouth…

(I’ve tried soooo much to mask it, and there’s just nothing! Mints, Listerine, toothpaste, food, drink, Biotene, etc. If you have a recommendation, bring. it. on!)

Jinx!

I knew it. I knew I’d jinx myself talking about how awesome I felt. 

I started to go downhill on Wednesday night/Thursday morning, I guess. It’s when the fatigue really hit. I woke up miserable. I was able to work my second session and go to class, though I probably should have stayed home. Friday, I met with a classmate for an assignment at the library in the morning. We worked on it all day, and after that, I was pretty much done for. I made it home and crashed in my bed. 

I spent the evening and overnight hours monitoring a low fever, the highest it reached was 100.2. If it hit 100.5, then I have to call the doc. It didn’t, thank goodness. 

I have felt like crap most of the day. Pretty sure it’s a just cold that has hit me like a freight train. Lots of coughing, runny nose, headache, and body aches. I laid low with soup and sleep today, some Tylenol. 

My appetite has been fine, and I haven’t had any other chemo side effects, at least not at the moment, so we’ll see how the rest of the cycle goes…maybe it’s just a cold after all.

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.