Wish I’d known…

A few random thoughts for today…

First, I am finally all caught up on all the Marvel Cinematic Universe movies and am ready for Infinity Wars, which is out on Tuesday. I know, I’m a dork, but I don’t care. I’m excited! These movies make me giddy.

I wish I’d known before this surgery that at two and a half months post-op, my doctor could end up cutting open my incision and adding more time to my healing.

I also wish I’d known that even if my drainage output was under the recommended amount, my body might still not absorb the extra fluid and needle draining might need to be a thing.

Would I still have elected to have the flap done? Probably. I just would have been a little more mentally prepared. The six week recovery window I was told was utter bull crap, and I think that’s what frustrates me the most. Don’t get me wrong, I’m not displeased with my doctors. I think they’ve done a great job and I like them. I just don’t ask a lot of questions in general, and with an operation this big, I think I handed over too much knowledge in good faith. So, note to self, if I ever have another major surgery, I should ask ALL the questions about draining, incision sites, months post-op, etc.

In other news, I don’t think I have a lot of fluid buildup this week. Usually I can tell because I can see it/feel it. But there appears to be nothing happening, which is great. I wonder if it’s the antibiotic? It’s the first time I’ve been on one post-op.

Oh! We went to the Riverdogs’ game Friday night! Unfortunately, I was in no shape to stay out in the heat/humidity after being outside all morning for work, so I missed the fireworks, but I had a good time while I was there! Brad and I are knocking things off our Day Zero Project list, one at a time. 🙂

That’s all for now, and I’ll update on my loads of appointments tomorrow!

Why “Rack Attack”?

Some have asked about my team name for the 2018 Race for the Cure. First of all, I’m whacky, so you know I’m not going to have a normal team name.

Again, I consulted Google for names (because while I am whacky, I’m not very creative or original when it comes to naming stuff). So I found a bunch of silly names, some of which I will absolutely utilize in the future.

“Rack Attack” stood out because I was a 90s child! And what TV show was huge in the 90s? That’s right, Saved by the Bell. And what was the band name in Saved by the Bell? Zack Attack! So, it was obvious to me what I should choose for my first goofy team name.

Next year will be something different, as will the year after that, and so on.

If you want to walk with Team Rack Attack, or make a donation, or buy a t-shirt, click here! The t-shirt order will close around the first of September, but registrations and donations will be around longer!

Race for the Cure

I mentioned in a previous post that I’m putting a team together for the Lowcountry Race for the Cure. Here are the details:

Why am I racing for the cure? It’s one thing to wear pink ribbons and talk about supporting a cause. It’s another to do something about it. That’s why I decided to show that I’m More Than Pink™ by racing for the cure and raising funds in support of Komen’s vision of a world without breast cancer.

Saturday, September 22, 2018
7:00 Race Village Opens
8:30 Walk Begins

Location:

Riverfront Park
1061 Everglades Ave.
N. Charleston, SC  29405

To join Team Rack Attack or to make a donation, click here.

  • To register: when you click the above link to go to the website, you can choose “register” (pink button at the top) and then “join a team.” The team name is Rack Attack.

To purchase a shirt, click here.

  • I will be placing the shirt order around September 1st, so please place your order before then. The shirts will be delivered to me and I will distribute before or on race day.

Here is the graphic that will be on the back side of the t-shirt. The front will have the team name and date over the left breast pocket.

IMG_4929

Please consider sharing this with your friends and family so we can build our team and raise lots of money for breast cancer support and research!

Tomorrow will be a better day…

Thinking positively here…

My fever has gone. I’ve spent the entire day in bed, reading and now watching The Incredible Hulk (getting closer to my Marvel goal!!).

I have eaten a bunch of junk today, with the exception of some grapes. Actually, I had a sunflower butter and strawberry jelly sandwich on whole grain bread, which was healthier than the Moonpies and chips.

I have been managing the aches with Tylenol and ibuprofen. It’s working a little, so is the rest. I’m pretty sore at the site on my right side where Dr. H stuck the drain needle yesterday. There’s a lot of squeezing involved in the draining, to manipulate the fluid to the needle. I don’t usually feel it, but since I’m slowly regaining feeling on the sides, it’s starting to get sore. It’s not terrible though. My lower abdomen is pretty sore on the surface, all around. I just hope I don’t regain full feeling any time soon because that is not going to be fun with a GH in my belly! Ouch.

Funny story: I was laying in bed and Daisy was laying on Brad’s pillow, Sam was laying by the front door. A ridiculously loud burst of thunder came out of nowhere and shook the house. Daisy jumped up and off the pillow, and Sam took off across the house. It was pretty funny.

Anyway, tomorrow will be a better day!

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.

The ugly…

Seems like there’s been quite a bit of that lately. I had my weekly appointment with Dr. H today. He drained ten from my left and seventy from my right. It also hurt! I think I’m getting back some feeling on the sides now. And it was low on the left because…the fluid has been draining out my incision hole! Hooray for that. I mean, I can’t make this stuff up if I tried. But at least I know why there was more than usual discharge this weekend.

So it was an eventful appointment, and I’ll get to the real fun part in a minute. First, he prescribed me an antibiotic. I don’t have an infection that he saw, but he did take cultures to check. I guess it’s a proactive/preventative measure.

Because…

I am now the proud owner of a gaping hole on my belly. Yay!

Yeah, so he cut me open. Thankfully, I still don’t have any feeling in that area so I didn’t feel a thing, except a slight tenderness on the far left side.

The gaping hole, or GH, is about the size of a Kennedy half dollar. Yes, it is basically round. It’s also deep; at least an inch, maybe more. I can’t even describe what it looks like, except that it looks like guts inside. He made me look since I’ll have to pack it twice a day.

So I have this solution stuff that I need to use to wet gauze, wring out the gauze, and stuff it in the GH, one or two pieces. Then I cover it with another piece (and like 12 more on top of that if I don’t want it to leak onto my clothes) and tape it down.

I want to roll my eyes because I am so over this. And there’s nothing I can do at this point, except heal, and it’s taking forever. I wish for magic! Lots and lots of magic. Healing magic.

<<sigh>>

So the GH should heal from the inside out. I guess my incision was healing on the outside, but not on the inside, which is why he cut it open.

Seriously gross stuff. It was almost like being at the dentist, under Novocain, and being able to feel the movement and pressure, and hear stuff, but not feel it. When I saw the scissors come out, I checked out. True story. Not sure I’ll be able to unhear the snipping of my skin, but at least I didn’t feel it.

Anyway, in other news, the scab formerly known as my right nipple has fallen off, so at least my upper half is doing what it’s supposed to do. There’s a little bit of raw skin that’s still healing, but it’s doing pretty well. Nothing to complain about there.

I feel like such a whiner in recent days, but I can’t help it. I feel like this should be the good part of all this, but it’s not. I feel like I should be at least getting to the good part, but I’m not. I’d almost rather be back in the chemo phase because at least then I knew I’d have crap days. And what’s really mind-blowing is that I have a GH in my belly and I feel no pain. It’s just weird. This has all been so weird.

Incision Issues

I posted that pic recently of my lovely incision (sorry) and how well it was healing, blah blah blah. Well, it’s being an a-hole now.

The smaller hole on my left side has been oozing. Sorry, I know that’s gross, but it’s real. My mom says it appears to be normal ooze, but obviously my doctor can make an official determination. It’s yellow in color, and plentiful. I’m going through gauze like it’s nobody’s business.

The hole on my right side, the bigger one that looks the most gnarly, is acting like a perfect gentleman. No issues whatsoever.

So yesterday, I noticed that to the left of the evil hole, there was a bit of a soft spot. You see, the tissue beneath the scar from hip to hip is pretty tough scar tissue. So for there to be a softer spot caught my interest. It had some give, and it felt like the skin was very thin and soft, almost like when you run your finger over a blister. It was also very sore and tender, like how an ingrown hair or pimple feels when you touch it. I just planned to not mess with it since my appointment with Dr. H is on Monday.

Well, this morning I did my usual ointment and gauze routine, and after a little while, I noticed that the soft spot had opened and turned into another hole. Dr. H had told me way back in the beginning that it was likely spots would open back up. So, I don’t know if that’s what this is or what. The other two holes never closed, they just stayed open. Anyway, this new hole is oozing, and the ooze appears the same as the one next to it, except it’s slightly tinged with pink, probably from where the skin tore when it opened.

Anyway, I’m glad I have an appointment tomorrow with Dr. H so I can see for sure if this is normal. It doesn’t appear to be infected, it doesn’t hurt or smell, and I don’t think it’s hot to the touch or anything. It is a little red around the new hole, but is that to be expected? Who knows?

All I can say is that this is so frustrating. It’s times like these when I wish I hadn’t chosen this operation. I want to be 100% already, and it’s so incredibly frustrating that I’m not. I’m not sure what I could have done differently — what I could do differently — to make it better. Every time I ask, I’m told there’s really nothing else I can do, that this stuff just happens.

My body is cancer-free, yet I’m not entirely free because I’m stuck dealing with all these after effects. So close, and yet so far away.

On a happier note, Brad and I are looking into a weekend getaway. Not sure where, just one of our many “someday” list places. We talked about it while we were out wandering today, and decided that we don’t necessarily need to plan a week-long vacation somewhere, we can just plan a weekend. Like San Francisco for example, we can fly out and spend a couple days doing things and be done with it. So we’re keeping our eyes peeled for either someplace nearby, or cheap airfare.

I’m also happy to report that I only have four more Marvel movies to watch until I’m all caught up! 😉

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 Zero Project

We did a thing! A fun thing. Ever hear of Day Zero Project? It’s a website where you can make massive, bucket list style to-do lists. I first came across it years ago, when I used to have a random blog, and made one of their 101 in 1001 lists. That’s 101 things to do in 1001 days, roughly 2.75 years, if I remember correctly. I never did finish that list, but when Brad and I were talking about having a sort of “life to-do” list, I immediately thought of DZP. What better place to host our list? And what fun to make it sort of a challenge at the same time?

So we made a list. Two, actually. Three, if you count the “done” list. One is the “101 in 1001” and the other is a “someday” list. It’s things we would like to do someday, but probably won’t get to before 1001 days is up…like different areas of Europe, tropical islands, etc. The catch is, we have to do the list items together! Things we do apart don’t count.

As I mentioned, we have some travel items, entertainment, food, classes, crafts, random date nights, and lots more.

Anyway, it’s super fun and I highly recommend it if you love a good list! Check ours out at this link.

We already worked on a few things this weekend when we had lunch at a local seafood joint and watched Ant-Man and the Wasp in the theater. It was a great Saturday afternoon date.

Hair Update

It’s growing in, and I’m pleased to say it seems to be just as thick as it was before. At least I think I’m pleased, I’m sure my hair will be back to annoying me in no time! I’ll try not to take it for granted though, since I know what it’s like to lose it and all that.

Some people who have taxotere as part of their chemotherapy do not have their hair grow back, or it grows back different. So I guess I’m one of the lucky ones.

I’m not quite sure what to do with it these days, so I just wash and dry and go. Which is nice! I don’t miss having to style my hair, not one bit. I never did, actually. I’ve always been pretty low maintenance in the primping department. Even when I used to straighten my hair, I’d wash it and braid it the night before, then straighten it when it was dry in the morning because I didn’t want to have to blow dry it. I don’t do makeup either. Occasionally if we have a special event I might do foundation and a tinted gloss, but that’s about it. I don’t like mascara, my lashes have always been dark and long enough. Plus, anytime I wear eye makeup, my eyes itch and itch and itch.

So au naturel it is.

Except my toe nails. They’re always painted. 😉