Chemo Brain Revisited

Today I realized the importance of the after c part of this blog. I thought all the important stuff was in all the during posts. I couldn’t have been more wrong.

I worked this morning, then made lunch before I had to go to an appointment with my oncologist. As I was putting my sandwich together, my phone started to ring. It was one of the universities I requested information from, and I wasn’t going to answer. I wanted to eat my lunch in peace. But I hadn’t picked up the last couple times (because they always called me when I was at work), and I really wanted to talk to them, so I picked up.

So I answered, and we talked about the program I was interested in. I talked about my goals with finishing my masters, including my thesis and graduate certificate, and then my plans of taking the BCBA certification exam. I mentioned how I wanted to take next summer to focus on studying for the certification exam, and didn’t want to start any new education programs until the fall, at the very earliest, assuming I pass the certification exam on the first try.

I told the guy about how I was apprehensive about the certification exam because I still struggle to read and retain information due to chemo brain. That tiny little statement changed the entire course of our conversation. It turned out, the guy I was talking to is also a cancer survivor. He told me that he knew exactly what I meant about the chemo brain, and told me that he talked to his oncologist about it when he experienced it, and his oncologist made recommendations that assisted him in overcoming it. I won’t mention what his oncologist’s recommendations were, both because he had a totally different cancer and the actual treatment was irrelevant. The point is that just because my cancer is gone doesn’t mean there aren’t still going to be things that I should consult with my oncologist for.

I thought chemo brain was just something I was going to have to live with. I play games, try to read, and otherwise keep my brain engaged as often as I possibly can. I thought that would help exercise my brain back into shape. I didn’t know they were other options. Now I do.

And I think it’s important to share this information because other people might feel the same way. They may finish their treatment and think that there’s nothing else they need to do, or that there’s nothing else they can do, because the cancer is over. That’s simply not true. And these are things I may not have even considered if I hadn’t picked up the phone.

So at my appointment today I talked about two things. One thing was the chemo brain, for which he referred me to a neurologist. Dr. YB said the neurologist might have different activities and exercises for me to do to help alleviate the symptoms of the chemo brain. The second thing is the aching in my toes, feet, ankles, and knees. Whenever I get up after sitting for a while, I struggle to get moving and am so sore in those areas. Dr. YB knew exactly what I was talking about and said it was a side effect of the hormone blocker. He advised me to stay off it for two weeks, then resume for two weeks, and see how I feel. If it is the hormone blocker, then we may switch to Tamoxifen. So I’ll report back on that.

We talked about some other things, and I’ll share more about that in another post!

It’s the little things

I think I’ve used this title on a post before, but it still apples! It always applies. Sometimes the littlest things mean so much.

The polish on my toes had faded pretty badly, it was also Christmas themed, so ta-da! I went with something bright and sparkly, something happy that would remind me that spring is coming.

It also reminded me that I am badly in need of a pedicure. Chemo dried out my skin so horribly and I swear my feet suffered the brunt of that. They’ve also become super sensitive and ticklish, so having someone touch them is going to be interesting. In the meantime, I’m gonna get my foot bath out of storage and soak in some Epsom salts.

Chemo Care Package Items

Someone asked if I’d share the list of items for the chemo care packages I am going to work on putting together. This is a rough list, but it contains things that gave me some relief, pleasure, etc. during my chemo treatment. I’m not sure that everything will make it in a donation bag since I’m not independently wealthy, so if anyone wants to donate any items, I would not say no! As I mentioned in a previous post, I plan to donate chemo care packages to chemo patients in the Charleston area.

Also, if you have a loved one going through chemo and want to gift them some items, this is a great starting point.

⁃ Chapstick (plain/unscented/unflavored) – My lips were dry and chapped through most of my treatment, even now. I say plain, unscented, and unflavored because smell and taste aversions are a real thing! I was ready to move out of the house when Brad cooked bacon one day, no joke.

⁃ Hand lotion (plain/unscented) – My hands peeled and got all crackly. Bonus points for a full body lotion! My entire body was flaky. Attractive, I know. Feet, too. Same scent rules apply.

⁃ Nail file (with a fine edge) – My nails got brittle (some chemo drugs cause nails to fall completely off, too), so having a nail file in my purse was a tiny little miracle.

⁃ Hand sanitizer (plain/unscented) – You know…germs and all that. Shouldn’t need to explain this one. Scent rules apply.

⁃ Biotin Mouth Rinse – This was nice to have. And Listerine (alcohol free). I got horrible cotton mouth, and sometimes I had the absolute worst taste in my mouth and thought I’d lose my mind.

⁃ Warm socks – Because who doesn’t like fluffy socks? I’d actually put fluffy socks on during chemo just so I could take off my sneakers and still protect my feet. I mean, you were sometimes spending the entire day there, might as well be comfortable.

⁃ Cup-a-Soup – There were days when I couldn’t eat or didn’t want to eat real food, so cup-a-soup was a nice alternative to plain broth. I could actually stomach it.

⁃ Tea (caffeine free) – A nice alternative to water. It was soothing for my throat when the dryness got to be too much.

⁃ Peppermints/Starlight Mints – Mints sometimes helped with the cotton mouth/bad mouth taste. It also helps during chemo when the nurses inject saline into your port…you can actually taste the saline in your mouth, oddly enough. So if you’re sucking on a peppermint, it masks that taste.

⁃ Puzzle book (word find, crossword, etc.) – Not only did puzzle books keep me busy during chemo, but they also helped work my brain while not at chemo. My oncologist actually told me to exercise my brain with crosswords, word finds, and stuff like that when I mentioned chemo brain to him once. So these are great.

⁃ Notepad – When chemo brain started affecting my memory, I started writing everything down! Whether it was notes to ask the doctor, a to-do list, or a shopping list, having a small notepad in my purse helped.

⁃ Pens/pencils – To use with the notepad and puzzle books, of course.

⁃ Deck of cards/card game/travel games – Brad and I played Phase 10 during my first chemo treatment. It was fun for me and him, and it kept our minds off what was happening, even if it was only for seconds at a time. So playing cards or travel games (smaller, portable versions of Checkers, Clue, Yahtzee, etc.) are a great addition to have on chemo day.

⁃ Adult coloring books – These are probably a take-it or leave-it for most folks. I liked my adult coloring books. I liked variety. I am an avid reader, I love to read, but I couldn’t focus enough (tired, chemo brain, etc.) to read books, so having lots of non-reading alternatives, was great. The adult coloring books just gave me one more activity to choose from.

⁃ Colored pencils/markers/crayons – For the adult coloring books. I went all out and bought myself this ridiculous package of 100+ gel, sparkly, metallic, and milky pen set. But seriously, a small set of colored pencils or crayons would do. I’m a little extra.

⁃ Bag to put it all in – The size bag depends on the quantity/size of the stuff you get. I had a few different tote bags, and I think totes were the best. And not necessarily anything fancy, like a reusable grocery bag style is perfect. I have one that had a breast cancer design, and another that says “Warrior.”

⁃ Refillable water bottle – Optional, since most people already have plenty of these. But I would get super thirsty while there and always brought a water bottle.

⁃ Blanket – Another optional item. I brought a blanket a few times, but often the clinics have them, too. So if you find a really nice one, I’m sure the recipient will love it. Otherwise, it’s not a big deal.

What not to gift…

Scented anything. Unless someone specifically requests something, I’d go with unscented everything. I was gifted a lotion that was plain, but it had a very distinct scent that made me so nauseated.

I would avoid food or snacks unless you’ve spoken to this person and they request something specific. Certain flavors and smells can be a total turnoff, even with beverages, so just be careful.

Books. I hate saying that because I LOVE BOOKS, but if anyone has the chemo brain concentration problem I had, books might be upsetting if they can’t read them. Again, if you’ve spoken to someone and they can read/want to read, gift them books!!

If I think of anything else, I’ll add them to the lists, but for now, this is a huge start. And please keep in mind, these are all based on my opinion, my experience, and everyone’s experiences are a little bit different. I’d like to say the items on the “do” list are pretty universal, but you never know. There are some people who may break out in hives at the sight of a crossword puzzle…

Another Update

My apologies! I usually write my posts from my phone while I’m waiting somewhere for something, like in a waiting room or in the car when I arrive somewhere early. I’ve been on the go so much lately that I haven’t had any downtime like that to share an update from my Monday appointments, so here it goes:

I had my appointment with Dr JB and Dr H last Monday morning. Everything looks good as far as healing goes. We did not schedule the surgery yet, but agreed it would be early May, after mine and Brad’s 10 year anniversary (!!!!!).

I went to the appointment with a short list of ailments, ones I wasn’t sure were a result of the surgery, chemo, or life. Let’s face it, it’s been a while since I’ve felt normal! The list included neuropathy in toes, tenderness and irritation where stitches were still poking out (more on this later), swelling in legs, muscle soreness, and joint aches.

Most of this was related to chemo, or rather the end of chemo, but Dr JB recommended using ointment on the incisions, and she was concerned about the swelling. She referred me out for an ultrasound/Doppler of my legs to check for blood clots. She also said the soreness and aches were probably a result of going from being inactive to active, and that I should just push through it, which is basically what I’ve been doing.

The other thing we talked about was my weight (yay!). She’d like me to lose about 10-20 lbs before the mastectomy because it’ll be better for my healing and I’ll have better cosmetic results, too. So I’ve been working on that and I’ll share more about what I’ve been doing in another post.

I’ll see both of them again April 26th.

I took a break for lunch and talked to the scheduler at Dr JB’s office and scheduled the ultrasound for 3:00.

Then I went to see Dr YB. My bone scan turned out fine. He still wants to do the shot he talked about last time that he feels will have a better long term prognosis than the pill, Tamoxifen. In order to do what it does to battle the cancer, it shuts down ovary production. I thought my ovary production was already shut down since I haven’t had a cycle since September, but apparently not. Dr YB said that’s actually a result of the chemo. I never asked, I just assumed it was the Herceptin causing that since the Herceptin is the hormone treatment, and I associate hormones with periods, but whatever. So they’re checking some hormone levels and we’ll probably start the shot at my next appointment, the 19th.

So I had my treatment, then I was off to the ultrasound. I ended up late because I didn’t leave the oncologist until 3:00, so I got there at 3:30. For the ultrasound, they do the three main veins in the leg (the names of which I cannot remember, but you can Google it if it interests you, or someone can leave it in a comment if they know). Having that goop on my legs was absolutely nasty feeling. I did apologize to the tech for the fuzz on my legs. Still haven’t shaved since September, still nervous to shave now because of the potential for ingrown hairs from the ones that never quite fell out. It’s a wait and see game right now. Fortunately, it’s still jeans weather and the fuzz isn’t obviously long, so I can afford to wait and see. Anyway, no blood clots. Yay!

I ended up leaving the hospital around 5:00, so I missed my Monday class, which sucked considering nothing ended up being wrong with me. I’m lucky my teachers are understanding.

In other news, one of the classes I did an incomplete in, Objective Assessments, I’ll be able to do in the fall, essentially from scratch, which is awesome! Such a relief to not have to worry about that right now. And I’m glad I can retake the class because I don’t remember much about how to administer the tests and stuff.

So I’ll chat more about weight loss and the perfectly timed delivery of Girl Scout cookies later!

🍪 🍪🍪

Chemo & Weight Loss

I think a lot of people associate chemotherapy with weight loss, or cancer with weight loss, I know I did. For me, it was because I’d known someone or seen someone with cancer or going through chemo who had lost weight. I think I applied that experience across the board, which is one of the reasons I was so concerned about being able to eat in the beginning.

So, one thing I’ve learned and talked about is how chemo and cancer are not a one-size-fits-all experience. There’re different kinds of cancer, different kinds of chemo, and different kinds of people.

The last few days I’ve been dealing with swollen ankles and feet. It’s been annoying. I think it’s because I was horizontal for so long, and taking things slow, and now I feel good and am being more physical, staying on my feet for longer periods of time, sitting upright…so gravity is doing what it does and pulling fluid down to my feet. Once I put my feet up, it dissipates.

Anyway, the swollen ankles have made me think about how I didn’t lose weight with cancer and chemo. I did lose 10 lbs the first week of the first cycle because of the taste/texture issues I was having. Once I took the nausea meds and found ways around those taste/texture issues, I gained that weight right back and didn’t lose anything again. I may have even gained weight, but I’ve only ever been weighed on the doctors’ scales through all this, and I swear those things are on a whole different frequency.

So yeah…I could stand to lose a few pounds, and now that I’m well, I’ll definitely be heading to the gym. But I don’t want to lose too much weight in my mid-section, because they need that fat to refill my chest after the mastectomy! Pretty cool deal. 😉

Fun fact: there’s a Billy Joel channel on Sirius XM…30…I’ve often prided myself in being able to name Billy Joel songs within the first few notes. Turns out I can name them before they even get played, too! He was talking about the story behind the song and I guessed the title, and I was right!

This weekend Brad and I trekked to Baltimore, MD for a book signing. I had a great time seeing my sisters and book friends (Hi Jennifer!), making new friends, and going to the movies. We’re actually driving home as we speak. It’ll be nice to be home! I’m sure Daisy missed us (not!).

That’s all for now!!

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!

The Last Chemo

Imagine the title of this post said by one of the dodo birds from Ice Age…you know, the way they say “the last melon.” Ok, so maybe I’m a little crazy.

Today is my last chemo. I’ve got about 15 minutes left and then I’m done!! I will keep on the 3 week schedule for the Herceptin until September, I believe, since that’s when I started. But that’ll be a cakewalk, only about 30 minutes.

The hard part will be over soon (in about 2 weeks, after I’ve gotten sick from this cycle and then well again).

I’m tired and not looking forward to feeling sick in a few days, but other than that, I feel good. I’m excited even.

So next up is Neulasta tomorrow, then my Herceptin day in three weeks, and then my lumpectomy. I’ll talk more about the lumpectomy and surgery stuff in another post.

I was solo at chemo today. Brad had to work since he took time off for our trip to Florida, so my parents dropped me off this morning. My mom would have stayed, but it’s honestly so boring here for visitors, so I told her she didn’t have to. They’ll be back to pick me up shortly.

A woman was sitting sort of across from me today, maybe in her 30s. I don’t know her diagnosis, or the drugs she’s on as part of her treatment, but she was hit with some of the nasty reactions/side effects today. They had to stop her treatment. It made me thankful for my body, and the fact that it has tolerated so much of the junk we’ve put it through. Sure, my liver still isn’t pleased with the chemo and my GI tract hates me, but all in all, I’ve done pretty darn well. My side effects have been almost entirely manageable, I’ve been able to function when I’ve had to…I look at what she went through and realized I could have had it so much worse. Imagine if I’d felt nasty sick every cycle while receiving treatment? Not being able to receive the full treatment? I can’t.

Anyway, I’ve got a few things on deck for future posts, so stay tuned!

It’s been a while!

Happy New Year!!

Sorry I haven’t checked in since before Christmas. I was chemo sick during the holiday and haven’t had much new stuff to report.

I can say that I didn’t have the texture issues with food that I have had in previous cycles, with the exception of potatoes last week. I had steak fries at lunch on Friday when we went out for Brad’s birthday, and the texture of the fries felt gritty and gross. Same problem with McDonald’s fries when Brad and I were road-tripping. I’ve been avoiding French fries ever since. Probably not entirely a bad thing, but I can’t say I’ll never eat another French fry again. Ha. Right.

All in all, the fatigue this cycle has been brutal as always, and I’ve had this insane sinus garbage going on. The sinus issues are causing an evil post-nasal drip that will not go away, and subsequent dry cough, particularly in the AM and late PM. I tried a humidifier, and I’m not sure if the humidifier doesn’t work, or if the humidifier just isn’t helping. So there’s that. I’ve also tried a variety of meds. Most alleviate some, but not all, of the symptoms, so it’s just not worth it to take them. I have enough of a cocktail going on.

I took the generic Prilosec for heartburn this time around, and it either worked or I didn’t have heartburn, at least not in the beginning of the cycle. I started taking it the evening of chemo as sort of a preventative measure, and like I said, it either worked or I never had the heartburn, which works for me either way. I did have heartburn a couple days ago, and a combination of Tums and Prilosec knocked it out. Yay.

Diarrhea is still super present. It’s been the one constant through this entire experience. I’m not sure what I’ll do when I’m finally regular again. It has become the new normal for me to be irregular, but I’ve learned how to manage and alleviate some of the less than desirable things associated with diarrhea (which, let’s get real here, is pretty much everything associated with diarrhea). Vaseline is my best friend. I even bought one of the small tubs (normally used as lip gloss) to keep in my purse for emergencies.

My last chemo is January 8th. I’m super excited for that part of this journey to be over and done with. I’ll still have to go for injections for the hormones, and I’ll find out the schedule for that on the 8th, but the days won’t be as long and the side effects won’t be as bad (except for the hot flashes, yuck!).

I hope everyone reading has had a nice holiday season! Despite feeling utterly crappy on Christmas, I had a nice day. And despite falling asleep before midnight last night, I had a nice evening yesterday as well.

The Crappiness Has Set In

I’ve struggled this week, mornings in particular. Sore throat, low grade fever, stuffy nose, runny nose, stomach issues…it’s almost over.

Almost. Over.

This is the beginning of hell week for me, and it’ll last about another week. Then I have one more cycle of chemo and it’s all over.

There will be other issues then, I’m sure. Surgery, recovery, etc.

I feel like those problems will be nothing though, compared to all this chemo sick.

I got satin sheets. My chemo nurse this week suggested trying them for the hot flashes since they tend to be cooler than cotton sheets. I’m laying on top of them, having a hot flash, so we’ll see about that.

Something funny I remembered about chemo day this week…I sat next to a nice lady who also has breast cancer, hers is triple negative. We claimed the space between us as a neutral zone. Anyway, moments after we introduced ourselves, like less than two minutes, I forgot her name, and she was calling me Amy.

It was kind of a relief to actually experience a fellow chemo brain.

Duh… (& hot flashes)

I spent a few minutes today looking for my phone that was in my hand. I was at chemo, and wanted to post something snarky, but by the time I found my phone (smh), I forgot what I wanted to say. So I figured I’d just say: “Hey! Today is my second to last chemo treatment! Woohoo!” Then I forgot to post it…

The chemo brain is strong with this one!

Aside from that, I’m doing well but super tired!

I may have mentioned that my liver numbers were a little high at my last chemo appointment. Well, they’re still a little high. So Dr YB reduced my taxotere dosage, as that can sometimes be a side effect. So we’ll see if that changes how I feel this cycle since taxotere is the nasty one. It would be nice since Christmas falls right smack in my bad week, so it would be cool to feel not as bad.

It was a long day, but I chatted with my recliner neighbor and listened to a book on tape, then did some word games and puzzle books. Tomorrow I’ll go for my Neulasta shot, and I don’t have to go for one week labs next week since my white and red cell counts have remained well throughout treatment. Score! One less thing to do the week of Christmas!!

After the Neulasta shot, the next thing I have to do is chemo on January 8th!

Oh! And I did talk to them about the evil hot flashes. Since my liver numbers are rising, the doc didn’t want to add any news meds to the ever growing cocktail I already have, as that can make those numbers worse. As it is, post-chemo I’m taking meds for: heartburn, nausea, and diarrhea, plus a steroid and Claritin for the Neulasta bone pain. And then I have other meds to take for more random symptoms that may pop up. It’s bananas, but I get it. So I’ll deal with the hot flashes. They’re a result of the hormones, since I’m basically in an induced menopause. Once I come off the chemo on January 8th, I’ll be continuing some hormone maintenance stuff until September. So once the chemo stops and the side effects slow down and those liver numbers go back up, we can look at treating the hot flashes.

I can’t really complain, I mean I’ve finally found fixes for most of what I’m experiencing, except the fatigue, lightheadedness, and hot flashes. It could be worse!

Ok, I’m going to crash! Have a great evening!!