Drain free!

Can you believe I was more excited to share the info about the Relay for Life than I was to share the news that I’m drain free?! Hopefully for the last time ever!

So Dr. H pulled the last drain on Monday. He also said everything looked great, and my follow up is scheduled for one month.

It’s kind of weird to not have to see a doctor next week. Whatever will I do??

Anyway, I’ve been working hard, brainstorming some fundraising ideas. I can’t wait to get started and make some things happen. I’m also in my last full week of school. Final exams are next week. My upcoming holiday break is exciting!!

Hope you’re all doing well!

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.

So that’s what we’re doing now…

I got up yesterday morning and felt pretty good about my appointment. I wasn’t feeling very sloshy in the mid-section, so I thought maybe I wouldn’t need to be drained, that maybe things were working in my favor.

The Dakins solution I’ve been using (the bleach stuff) has been soaking through the bandages and my clothes a little bit. Nothing I haven’t been used to over the last week of me having to pack this wound. So when I got out of the car at the doctor’s office and the waist of my pants was a little wetter than normal, I just shrugged it off, knowing he was going to end up re-dressing it anyway.

So I’m sitting on the bed/chair/bench thing in the office and he comes in, asks how it’s going. I say great. He goes to look at the wound and the gauze is tinged pink, I lamely say that maybe it’s the dye from my dark maroon underwear since the Dakins has been bleaching my clothes. He says he thinks I’m draining.

Nothing really surprises me anymore, so whatever.

I lay back and he peels the stuff off, unpacks the wound and there it is. Like an overflowing manhole during a Charleston flood…the gaping hole on my belly has sprung a leak and is spewing out lymph and whatever the heck else all over the place. I feel a gush of warmth over my belly and legs, lift my head up, see my belly fountain, and just lay my head back down.

There’s nothing in the universe to better describe that moment. Convenient that I found this meme the same day Mount Jennifer erupted.

Needless to say, I didn’t need to be drained. Both sides of my body were draining out of my gaping hole (GH). Fantastic, if you ask me.

Aside from that, things looked good. Dr. H was very apologetic about the fact that I was completely drenched, like it was his fault, which it wasn’t. I mean who the heck knew that was going to happen? I told him it hadn’t been draining like that, because I most certainly would have called, that this was brand new.

So now I’m draining a little bit here and there, which is totally fine by me because that crap needs an exit point! If it drains out my GH, then I won’t need to be needled.

Oncologist was uneventful. I only have two more infusions before I’m done with that. I can’t wait to lose this port. I swear it’s getting closer to the surface, like it’s working itself out. My nurse even commented on it looking close to the surface. Oh well, it won’t be too much longer and then I’ll be having it removed. Ta-ta port who remained unnamed. I can’t believe I never named it…I guess I always thought of it as Pete the Port because that’s what Judie’s port’s name is…

So I’m walking around, packing a washcloth in my pants to sop up any extra drainage so I can continue living my life. I do get a little sore in the mid-section here and there, but it’s tolerable. The washcloth doesn’t get completely saturated, so that’s nice, but at least my clothes are protected. But…awkward…

In other news, Brad and I watched Avengers Infinity War tonight, and now I’m officially caught up on the MCU. Now I have absolutely no idea what I’m going to do with my life. No idea. I mean, I’ve been living off my Marvel to-do list, now what? WHAT?!

I’m kidding. It’s not like I don’t have work, school, more work, Daisy, A gaping hole in my abdomen, Brad, food…I’ll be ok.

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!

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 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.