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!

Still one drain…story of my life.

I had two drains removed yesterday, the ones in my chest, which is great because they were sore and itchy and nobody liked them. Ha. Seriously, though. I was so aware of those two. I kind of figured the belly one would stay, so I’m not surprised. I’m not even that annoyed about it, except this whole shower thing, but I’m about to bust out some plastic wrap so I can shower. Not even kidding. Shh, don’t tell.

I’ve had a BM since I last posted. I know that makes you as happy as it makes me. I’ve slowed down on my water drinking and I know that’s part of my problem, so I’ll pick that back up. Also, the anti-nausea meds can cause constipation and since I’m not taking oxycodone anymore, I’m not taking the anti-nausea meds anymore. I’m also getting a little annoyed that constipation isn’t coming up on the predictive text on my iPhone and I have to spell it out every time. It’s a long word, Apple, get with the program.

I’m working my way into my new food plan, and healthy eating is making me feel good. Yay! Should regulate some stuff as well. This time I’m doing something a little different, which I’ll talk about later, just to give it a try. So far I love it, and we’ll see if I have results. I also can’t wait to get this drain pulled so I can exercise, but for now it’s walking!!

That’s all the update I’ve got for today, so I’ll share more when I’ve got more. 💜

Nausea, constipation, gas, and insomnia, oh my!

I almost sound like a Pepto Bismal commercial. I’m still feeling pretty good. Still some soreness at my port site and on my ribs at the entry points for the drain tubes. I don’t have pain at my belly or chest incisions.

I’m backed up from the medications, which is incredibly frustrating. And, ironically, I take more medicine for the gas and constipation. Today, nothing seems to be working in that department though. It’s different from the last time because I was in the hospital for the days following the surgery and I didn’t have any bowel movements there, so I guess I’m not doing so bad in the grand scheme of things considering I have had a few BMs since this surgery, they’re just not as frequent as I’d like them to be, so I’m uncomfortable.

Also, just a note, I’ve had very little appetite today. I had a late lunch, ate some fruit, a cupcake, and that was it. I have been eating pretty regularly, but today was a blah day for food, which perhaps is related to the constipation.

Sleep is random. I was having insomnia before, and the only thing that seemed to help the last couple days were the pain meds and the muscle relaxer. But I didn’t take any of those during the day because I really didn’t feel like I needed them…which is good. I did take a pain pill around midnight because of the rib pain. It’s very uncomfortable, and I will be glad when those are pulled. I can’t even feel the one at my waist.

So it’s 2:30 and I can’t sleep. I’m watching more Buffy the Vampire Slayer and listening to Brad snore and slowly going insane…

I’ll update after my post-op appointment with Dr H on Monday.

Final Surgery Recap

And now for a more comprehensive recap of my surgery.

I had it at the same hospital where I had my mastectomy, so I had high hopes. Nothing went wrong, but being an outpatient was a different experience. My pre-surgery nurse was nice, but had no personality and a perma-frown. I tried to get her to talk or smile, no luck. She did interact with me, but she just never smiled. She took my vitals, asked all the right questions, and hooked up my IV. Just very straight and to the point, unlike many of the other nurses and techs I’d come into contact with throughout this journey.

Next I met the anesthesiologist, surgical nurse, and Dr. H. Then the anesthesiology nurse came and gave me chill out drugs, and took me away…while I still had my glasses on and before I could say goodbye to Brad! I don’t remember much else after that. I do vaguely recall moving from one gurney to another in the OR, but that’s it.

I woke up in recovery with a very dry mouth. I was given an anti-nausea patch before the surgery and one of the side effects was dry mouth. It lasted quite some time and I drank my usual post-op cranberry juice and had some ice chips. I tried to eat some crackers so I could take the pain meds, but my mouth was too dry so I stuck with the ice chips.

The pain has been intermittent. I have a pretty high pain tolerance, so it’s hard for me to judge exactly what it all feels like.

First off, no more port! So weird. It’s the smallest incision, but it’s the one I feel the most. That’s probably because I still had a lot of numbness in my chest and abdomen from the previous surgery.

My boobs are smaller (yay!). I’ve gained weight since the previous surgery, and since abdominal fat grows faster than other fats, my boobs gained weight. Plus, my boobs were a little too big for my liking anyway, so I’m glad they are a bit smaller. And, of course, this surgery shaped them up a bit since the flaps were removed. Remember the pic of the softball looking stitches? They are gone!

My chest is a little sore, but what’s weird is the the tube from the drains is so close to the surface. It looks totally crazy.

The incisions on my breast are just straight lines from my nipple down to my chest on each side. Pretty simple and tame looking. Right now there are steri-strips over those incisions, so once those come off, I’ll share pics. Dr. H fixed about a 10 inch stretch of my abdominal incision where the scar tissue was a little gnarly from him having to reopen it so it would heal from the inside out. That looks neat and clean, but it is also covered steri-strips.

I have three drains, one on each side of my chest and one at my waist. The ones in my chest are not producing much, but the one in my waist is. Last night was 60 ccs, this morning was 30. Each side was less than 10 this morning. I am hoping all will be pulled at my appointment on Monday, but I’ll accept whatever I can get. I certainly don’t want fountain belly again. I did not get a surgical bra or one of those tank tops that hold the drains this time, so I’ve got a sash made out of gauze that the drains are hanging from. It’s quite awkward. Last time, the drains had clips I could clip to my shirt or pants, not this time.

My appetite is fine and I have a good level of energy. I am a bit constipated from all the drugs, so I’ve been taking some kind of fiber pill to help me use the bathroom. I can’t take a shower until the drains are removed, so that’s fun. It’s a good thing I have a shower sprayer with a hose so I can clean from the waist down and wash my hair. I’ll have to use a wash cloth everywhere else. (Insert eye roll here.) I guess there has been an increase in infection related to showering with drains, so Dr. H changed his aftercare instructions. I just want to be healthy, so I’ll do whatever they say!

Not much else to report at the moment, at least nothing I can think of. I’m off work until after Thanksgiving, at which point I hope to be feeling at or close to 100%. It’s hard working with kiddos when you’re not well or don’t have full range of motion. Tomorrow, I’m going to try to go out with Brad for a little bit and do some food shopping. I’m ready to dive back into our healthy eating plan, and I figured I’d use my week off next week to get readjusted to that, even though it is the week of Thanksgiving and it seems dumb to talk about healthy eating and Thanksgiving in the same sentence. But that’s the thing about the plan he and I are following. It’s OK to take a day off or to make mistakes. It’s not going to throw us into a downward spiral of shame. It’s just one day.

So yeah, I think I’ve included everything and if you want to know more, just ask! It’s quite possible that I’ve omitted something or glazed over something else in my medicated stupor over here. You all know I’m not shy, so ask away!

Fever

I fell asleep early last night. I felt very achey and exhausted, so I passed out. I checked my temperature, and I didn’t have a fever, but I had taken some Tylenol for the aches.

I woke up several times throughout the night to use the bathroom. I swear, it was like I had drank a swimming pool full of water. One of those times I checked my temp and it was 100.5. Yikes! Might not seem high, but for someone whose temperature is usually “normal” around 97, it’s kind of high. I was so hot, but so cold. Achey…traditional fever stuff.

It was kind of weird since I hadn’t had a fever before I was gutted yesterday. I took my second dose of antibiotics this morning and no Tylenol, and the fever went down. It’s around 99 now, but at least it’s going in the right direction and the antibiotic is doing its job.

I was going to take a pic this morning, but dear lord it looks nasty. It’s just very raw and red and yellow…thank goodness for antibiotics.

I’m also pretty sore around the incision area. I called out of work today, which I hate, but I knew I’d be useless with a fever and body aches. I’m trying to spend the day in bed so I’m not putting pressure on my tummy area. It just hurts to get up and down, up and down.

Oh, and the solution I use on the gauze before putting it in the hole smells like bleach. Why? Because it is bleach…I give up trying to understand some of the weird stuff I’m told to do.

Anyway, I’m just laying around and reading. I’ll probably nap again here soon, but it’s hard to get comfy on my back when I’m not completely exhausted, so we’ll see how this works.

Wish me luck for tomorrow! I hope it’s a better day.

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!

Drains and Pains

A little update…tomorrow I have an appointment with my plastic surgeon, so I’ll probably have more news then, but venting is cathartic, so here comes random stuff.

I’m over these drains. Over them. I’d kill to be able to lay on my side, even if only for five minutes. My butt is over all this supine nonsense. They’re still putting out about 30-40 CCs a day each, so I’m doubting they’ll be removed tomorrow. Yay. I can’t remember the magic number from my doc, and the web ranges anywhere from 30-50 in a 24 hour period. So my hopes are not up for removal. The most frustrating deal with the drains is accommodating them. I have to be able to clip them or tuck them somewhere. It’s annoying.

I’m taking pain meds less frequently, so I’m starting to feel more soreness in my chest and tummy. It’s more of a discomfort than anything else.

And it looks like the part of my tummy incision we’ve been watching, the spot where Dr H said I’m most likely going to have necrosis, seems to be living up to the hype. I honestly can’t tell all that well because the incision still has the suture tape over it, but it is peeling a little bit in some spots, and from what I can tell from peeking underneath the tape in that specific spot, is that there’s necrotic looking stuff happening. And that’s about as technical as I can get, since I literally have no idea what I’m talking about. I happened to Google images for “necrosis” and “tummy tuck” (which I don’t recommend ever doing, ever) so I’d have an idea of what to look for, and basically it’s a break in the incision, like an open cut, and there’s yellowing of the tissue. If you don’t heed my warning and do Google the aforementioned terms, I swear on all that is holy (hole-y, get it, har har), my stomach does not look like that. The spot I can see is about an inch worth of the incision, if that, and like a millimeter wide. It’s like a dash, not a gaping hole the size of Rhode Island.

Anywhoo, all signs point to no swimming for me when I go on vacation in a couple weeks. Or when I step out in the backyard… Totally sucks, but whatever. I can dip my feet in and I guess that’ll do for now.

So I’m a little whiny and mopey because I feel like this will never, ever end. Then I read an article on my local news app that a news anchor and a photojournalist from a Greenville County news station were on route to do a story in NC when a tree fell on their vehicle and killed them both. Sort of puts things in perspective. I survived, you know? This is just the bumpy road back to my normal.

Thoughts and prayers to the families and friends of those two individuals.

Post-Op: Part II

Still a little drowsy from the meds, but I just had dinner so I’m feeling a little surge of energy and alertness, so I thought I’d try to squeeze in another post.

I had a catheter. They inserted it while I was unconscious, so that’s cool, because apparently that’s what’s uncomfortable about it – having it out in while you’re awake. So yay. It was kind of neat to just be able to pee without thinking about it. There were periods of discomfort, mostly due to the positioning of the drainage tube. It was uncomfortable when they pulled it out, too, but it’s not like they yanked it. They did it gently.

I’ve gotten up to pee three times since the catheter has been removed. Standing up is uncomfortable because I want to use my arms to push up and stabilize myself, but I can’t. I also feel like my abs are going to jump out of my body. I think it’ll be much easier to do once I get over those things. The first time I tried to sit to pee was a struggle, but the second time I remembered my squats and it was a piece of cake. Laying down hurts when I engage my abs. The nurses hold my back and lower me, but it’s nearly impossible to just release my abs and let them do the hard work. So that’s another thing I need to get over.

The last thing I remember before the surgery was the anesthesiologist saying he was going to sedate me a little bit to do the nerve block, which I remembered from the lumpectomy. He inserted the medicine into my IV and it was game over. I vaguely recall telling Dr H about my successes with losing inches around my mid-section, and saying something about wanting big boobs. That’s about it! Then I woke up in recovery. So while the world was passing hours upon hours, I was in an amazing time warp!

And I do have big boobs apparently. Double the size. Yowza!

Anyway, getting groggy again so I’ll talk to you later!!

I also apologize if there are typos in any of these post-op posts. I’m not proofreading, and I’ve only got one eye open half the time. Ha!

TTFN

Post-Op: Part I

I made a list of the bazillion topics to cover so I don’t completely flake out the way I did with the lumpectomy. It’ll be broken down into different posts as I feel the umf to write about. I have a little burst right now, so I’m going to try to cover some stuff. It may be totally out of order from the actual series of events, but I’ll include everything I remember!

First off, everything went great. Everything looks good. All is well. So yay for that. The mastectomy and the flap took about 8.5 hours total. Unfortunately the part of the hospital Brad was waiting in was a cellular dead zone, so he didn’t get updated. He would just have random missed calls, but the phone never rang.

Pain has been moderate. I had the same nerve block as I did with the lumpectomy, at the upper shoulders, and that has begun to wear off. Pain is being managed with pain killers and I’m doing ok with all that. I also have a nerve block, still do, at the abdominal incision.

I’m also on a muscle relaxer to help with the ab, back, and chest muscle tension. Those are the areas I’m feeling it the most. And of course an anti-nausea med.

I started with an IV, which I still have but they’re not currently using it. I was getting the meds intravenously, but this morning I was able to switch to pills, which is lovely because any time the meds went through the IV, it burned!!! I was also getting IV antibiotics last night into this morning. I haven’t gotten any pill antibiotic yet today, but I may be done with that now anyway.

Since I was horizontal for so long, I had some crud in my chest, so I’ve got to use this little breathing thing to help break that up.

I have a lot of gas/bloating around my stomach area. So I’ll be passing quite a bit of gas (no surprise there!), and it will dissipate more and more each day.

I have drains: 2 for the breast area and 2 for the abdomen area. The breast area has had less liquid than the abdomen, and part of that is just due to gravity. I may go home with all 4, or I may go home with fewer. It just depends on how much is coming out.

Ok, so I’m pretty tired now! I’ll update with more later or tomorrow!