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!

Coming at you live from my LAST treatment!

I can’t believe it’s been a year already and I’m done!

All is well on the doctor front. I saw all three of my docs today and everything is great. One more month to see the plastic surgeon before we schedule surgery. Also, it looks like I’ll have drains for the flap removal. Boo! And he’ll be straightening things up around the mid-section, so I’ll probably have a drain there, too. So it’ll be a slightly bigger recovery than originally planned, but it’s all good because it’s almost over!!

I’ll have more surgical info after that appointment, and I’ll share it then. Dr JB will also be there for that appointment so she’ll translate whatever Dr H says. Haha.

So good stuff here!! I’m healing and I don’t have to see my oncologist for three months. I asked him what I’m supposed to do now, and he said “live your life.” Haha, what does that even mean anymore?!?

I guess we’ll find out!!

More fluid…

This week, Dr. H took out about 80 CCs combined from both sides. Good news, it’s less than last time! Bad news, there’s still fluid. Not much we can do but wait. Wait and wait and wait some more. There’s nothing I’m doing or not doing, it’s literally a waiting game at this point.

He said everything else looks good, so that’s good. I’m still hopeful that we’ll be on target for my final surgery in September. My outer breast tissue/skin just needs to finish healing. It’s getting there.

I’ve been on a movie kick lately. I watched Thor: Dark World and The Longest Ride and The Best of Me, all through Amazon Prime. I’ve also read a couple Karina Halle books. I’ve been busy with appointments and work, so I’m just enjoying these quiet and brainless moments.

Ohh, but I’m not sure if I mentioned my wonderful day on Friday and I just have to! For those of you who don’t know, I work with kids who are on the Autism spectrum. I am a Registered Behavior Technician, and I do ABA therapy (applied behavior analysis). So I work with kids and have several therapy sessions each week. On Fridays over the summer, the company has arranged group social events for the kids who have full-day availability on Fridays, and whose parents sign them up. One of the stops for our Friday social was The Little Gym, and it was amazing! The kids had such a fantastic time, it made my heart smile. Seeing them in their element like that, it was just the absolute best. I just had to share.

Little oncologist update: I had my Lupron shot Monday. My arm is still a little sore. Waa. I didn’t see Dr. YB, I only see him on infusion day, so I didn’t get to give him an update on the symptoms I was whining about last week, but I’ll share here. I have only had one hot flash episode, and it wasn’t really a hot flash, it was like it wanted to be a hot flash but couldn’t quite get there. And it lasted a while…it kept me awake. Annoying. But other than that, the drugs seem to be working. Yay!

I get asked occasionally if I mind if people share my blog with their friends or family, and I don’t mind at all. Please feel free to share this with anyone who may want to read it. I know there’s not much going on here lately (thank God!), but some of the past posts may be of value to someone.

Day Full of Docs

It’ll be nice when all this slows down. I have a doctor’s appointment every week, and it’s frustrating .

When I was leaving my first appointment of the day and trying to schedule a future appointment, it was hard to accommodate the time because of work. I may be able to adjust or abbreviate my sessions, but I don’t want to do that because it creates a domino effect. I cut one short by 30 minutes, then I have to add 30 minutes somewhere else. I cancel one, I have to make it up another day. So the easiest thing to do is to schedule the doc around work.

I was drained again by Dr H, about 45 on each side. The right side had more this time than last time. I’m probably going to have to get drained again next week, blah blah blah. Next week I’ll go to his office in Mt. Pleasant, instead of the office he shares with Dr JB on Monday mornings, which is fine. It works out well with my schedule that way.

I went to the oncologist next for my infusion. I’m on cycle X of 17. Almost finished! Then we’ll talk about where to go from here as far as prevention and future treatments. I asked Dr YB about my hot flashes, issues falling asleep, and my feet.

Yep, you read that right. My feet. Why? Well because they have been so incredibly achey since around January! I guess it could have been going on for longer, but I was so inactive prior to that due to the chemo, and I was feeling so many other things, that I might not have even noticed it was an issue, or just blamed it on my inactivity. Anyway, once I’m walking, they’re fine, but it’s after I’ve been laying or sitting or driving and I get up and try to walk that they ache and hurt. So I figured it wouldn’t hurt to mention it, and see what he advises.

Dr YB wrote me a prescription for oxybutynin, which is actually a bladder medicine but works for hot flashes. One of those random off-label uses for drugs. I also got a refill for my letrozole. As for my feet, he recommended trying Aleve for 5 days to see if that helps. He said that with my hormones being messed with, it’s possible that’s why I’ve been having trouble falling asleep, so he said to give it some time and see how it goes. My nurse also suggested no caffeine after noon. I don’t have a lot of caffeine as it is, just the occasional sweet tea (since the soda I drink is caffeine free – but I rarely drink soda anyway).

So we’ll see what happens over the next few weeks until I’m due for my next infusion!

Is it hot in here?

Yowza! The last two weeks, the hot flashes episodes were off the charts. I even checked my temperature one night just to make sure I wasn’t overlooking a fever. They’re like how they were when I was going through chemo.

During the first few cycles of the Lupron, the hot flashes were just that…flashes. I’d blink and then they were gone. I thought they were a piece of cake. Ha. Hahahaha.

I should have known better. Nothing about life with C was easy, why should anything after C be easy?

I have an appointment with Dr YB tomorrow, so I’ll talk hot “flash” management with him then. That and sleep. I’ve had a heck of a time falling asleep this last week, which I don’t believe is related to the hot flashes since they don’t necessarily occur together. I forget what number my infusion cycle is tomorrow, but I know it’s close to the end. I want to say I have one or two more after this.

I also have an appointment with Dr H tomorrow. I’ll get drained again. I know this because I can tell there’s extra juice in my abdomen. Yay.

I’m restarting my clean eating tomorrow, and exercise, I’m looking forward to fueling my body with stuff that’s good for me again. I felt so good, physically, when I was eating clean before the surgery, and I wish I could have kept up with it post-surgery, but my appetite was just so off that I felt like I needed to just eat what I could.

Also, I’m creating a team and registering for the local Komen Race for the Cure. I’ll post the details here once I’ve got it all together, in case anyone is interested in joining or supporting the efforts. It’ll be Saturday, September 22.

Post-Vacation Blues

I had a great time on vacation. Getting to spend some time with Brad without work and doctors and having to adult was wonderful.

I ate three burgers (one of the restaurants at the resort has the best burgers I’ve ever had in my life, no lie) over the course of the week. That’s about two more burgers than I’ve had so far this year. They’re so good. If you find yourself at Orange Lake Resort in Kissimmee, hit up Legacy Grill for a Smokehouse Burger. Ah-mazing.

I also ate way too much chips and salsa at Chuy’s, and let’s not forget the margaritas. Yum. I had bought Malibu rum because that’s sort of my go-to alcoholic beverage – I like it in Diet Coke or fruit juice. But I had a margarita at Chuy’s, then cheap margaritas at the resort during happy hour, and I fell in love. I think tequila does that to you. Well, I guess it’s a love/hate thing since tequila kicks some people’s butts.

I read, was totally lazy, and drove the cart while Brad golfed one day. It was a nice time.

So I’m home and this week is back to reality! I’m happy to be home with my pup, she missed us and we missed her. I think our best vacation ever was when we went to the Outer Banks and were able to take her with us. Pets deserve vacations, too.

I had an oncologist appointment this morning, got my Herceptin and Lupron. Nothing new to report there. Everything is “normal” there.

I’m returning to work today for real. I’ve got a few line therapy sessions this week, and I’m looking forward to that.

So I’m feeling good and healthy. I’ll be thankful when the rest of the soreness is gone. I’ll also be thankful when I can start exercising again and lose this ache I’ve got in my joints again. I hate that I went steps forward and then steps backward in regards to activity, but I know that extra strength I built up before surgery has helped me a lot over the last several weeks.

Being at the oncologist now is weird. I remember going and dreading what I knew was to follow. I don’t have that anymore, which is great – not complaining over here! It’s just weird because I’m in and out of there, and I used to see some of the same faces, but now there’s often new faces in various stages of treatment, and it’s weird. I want to say something, something motivating, because I was where they were, but I don’t know their story. I don’t know if they’ll be where I am now one day, or if their situation is more dire. So I don’t want to pull something straight off one of those top-ten-not-to-do lists for cancer patients. So I just keep to myself and smile.

But I want to do more. One day I was there and someone had put together little comfort packages and handed them out to all the chemo patients. I think I’m going to do something like that. Put together a list of things that truly gave me some comfort during my chemo and make little care packages to hand out. There are other, grander things I’d like to do, but for now this might just do. Little things mean a lot, at least they did to me. So maybe these care packages will brighten someone’s day.

High-Five!

I’m at the oncologist at the moment, and I wish I’d brought some of the things I have to do from my to-do list! All this idle time! I’ve been updating my lists of things to do in between blood draws, meeting with the doc, and now sitting here for my infusion. I feel so organized.

Anyway, things are still looking good for me. I’m going to have to get another echocardiogram soon, so it’ll probably be planned for next week so I can get it done before surgery.

Dr YB told me to eat at least a fist-sized portion of cruciferous vegetables (broccoli, kale, cauliflower, brussel sprouts) every day. I was like, I’m already doing that. I eat 5 portions of veggies, and one is almost always cruciferous because that’s what I like. He also said he wants me exercising, heart rate up to 150, 30 minutes every day. Well, I’m doing that already, too! He said he wants me to build to 150, I told him I’ve been doing this for weeks. He hive-fived me. So yeah, I’m ahead of the game, which is exactly where I hoped to be.

I’ve had 2 appointments with the PT where I’ve done different exercises. I’ll share about that in a separate post.

Some fun stuff…over the weekend I did the autism walk in Hampton Park in downtown Charleston with my nephew. I also attended my niece’s 6th birthday party! Then we had a funeral for a Brad’s Aunt on Sunday. It was a nice weekend spent with lots of friends and family.

At the birthday party was our friend, James, who was diagnosed with colon cancer several months before I was diagnosed. He’s had chemo and surgery, and is starting chemo again because it’s starting to come back. He’s in good spirits, like me, and it was actually really cool talking to (commiserating with) someone I know well, and who is going through something similar. We have a similar sense of humor, which only people going to through cancer or who are close to someone going through cancer understand. It tends to freak people out when we joke or laugh about stuff, but when you deal with the variety of BS cancer brings to the table, you have to joke and laugh. Some people get that and some people don’t. 🤷🏻‍♀️

Anyway, I’m trying to wrap up a bunch of things before surgery…tie up lots of loose ends! Wednesday is our 10 year wedding anniversary, and we’re going out of town for the weekend to a concert in Charlotte. I’m looking forward to the break before the surgery!!

And here’s a cute baby goose butt before I go. My view at the oncologist.

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Super cute siblings!

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Oncologist Update

I had my regularly scheduled appointment with my oncologist earlier this week and forgot to post an update. I guess it’s a good thing I’m keeping busy enough to forget to post…or a bad thing that I can’t remember to do it? Ha, regardless…here it goes.

As far as the oncologist goes, I left off with Dr. YB wanting to check my hormone levels and possibly start me on a shot. So Monday was a follow up to that. My hormone levels indicated that I’m already post menopausal, so that’s cool. The shot, Lupron, is a hormone therapy. I’ll be getting it for two years. After the two years is up, I’ll start Tamoxifen, which is another hormone therapy. Apparently the Lupron has better results on people my age as it completely shuts down the ovaries, versus just blocking the estrogen receptors. In another week, I’ll start a Femara pill, which will complement the Lupron.

Side effects: hot flashes. I had the shot about a week ago and I haven’t had any major hot flashes. Hot flashes were a big thing for me during chemo, so maybe I’ve gotten used to them. I don’t know. I was doing a work thing today and the woman I was with said it was chilly in the room we were in and I was warm. I’ve always ran sort of cold, so maybe I’m just on a permanent temperature change now.

So the shot could have gone in my butt cheek, but fortunately it was a small enough dose that it went in my arm. But man, it was sore! The shot itself didn’t hurt. I barely felt it, but it achhhhhhhed afterwards. But only when I moved my arm in a certain way…so naturally I kept moving my arm in that certain way to make sure it still hurt or something?

The downside of this shot is that it’s on a four week cycle, so while I’m finishing up my cycles of Herceptin, I’ll be hitting the oncologist two weeks in a row occasionally. Like April 9th and April 16th. At least the shot days will be brief.

I’ll update some more if anything changes! On another note, because we all know how much I just love talking about bowels, I’m still not quite regular. It’s very frustrating and I’d really like to have some normal BMs one day! Ugh.

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!

🍪 🍪🍪

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!