Gray hairs and stripped skin

I remembered what I wanted to complain about on Friday!

My hair is growing in. It’s thick and fluffy and will be back to aggravating me in no time. Well, it’s already aggravating me because my stupid gray hairs are growing back in. Give me a freaking break!? Ugh. Anyway, that’s one of the things I wanted to mention but forgot about.

The second thing is that I am literally pulling my skin off with this stupid tape every day. I stuff my wound with gauze, then tape a gauze pad (or seven, since I’m draining there, too) on top. I try to put the tape in a different place each time so I’m not ripping it off the same skin ever time I change it. I’m running out of skin! Sometimes it even bleeds. This crap hurts. And it’s weird because I don’t have feeling on my skin above the incision line, so I can’t feel it. I can only see that my skin is super red and sometimes bleeding. Below the incision line, I feel, and I don’t like it at all!

Ohhh! And since I hate shaving my legs, I’ll add that it’s quite annoying to have my leg hair growing again.

In other news, it looks like gaping hole is getting smaller. It’s getting harder to stuff the gauze in there. It’s still totally there, though.

Moving right along…

Yay! So I’m doing well enough that I’m finally graduating to seeing Dr. H every two weeks. It only took three months!

I had my follow up appointment yesterday, I did not need to be drained as I’m still slowly draining out the GH. I really want to share a photo, but it’s so gross looking, so I’m really holding back here. I’ll probably post one eventually.

Anyway, Dr. H said everything still looked good and sent me on my way. Brad came with me to the appointment, as he does whenever he’s off on Mondays, which is how my appointment filled Mondays came to be.

What else is new?? Not much.

I looked at a diagram of the layers of skin, fat, and stuff in the abdomen. I’m kind of wondering if what I see as the back wall of my GH is my stomach muscle, aka my abs, or flabs, as I affectionately call them. It’s kind of fascinating, to be honest. I can actually see layers, I’m just not entirely certain what they all are and I feel like an idiot asking Dr. H.

I’m also excited that I’ve been writing again. Over the weekend, I reviewed something I was working on last year and boom! It was like the floodgates opened and all the words came out. It was quite exciting–it is quite exciting. It’s touches on a tough topic, one that me and many other people I know (and don’t know) struggled with, infertility. I’m eager to get it finished and put it out there!

Umm…ok so non-sterile gauze pads are super hard to find. I need the woven kind, not the sponges. There are random medical supply places that sell them online, but trying to find somewhere local has not been easy. There’s a place in Mt. Pleasant, but that’s sooooo far away. Not really, but traffic sure makes it feel that way. I finally ordered from Amazon, but it’s not Prime shipping eligible, so I’ll see it never. Kidding, maybe Friday, but definitely not tomorrow. Gah, I’m so spoiled by Prime shipping! Brad was able to grab some from me from some criminals operating a medical supply store. I say criminals because they charge like $8 for 50 2×2 gauze pads. I will go through those in less than 3 days. I got 200 at the place in Mt. Pleasant a couple weeks ago for about $4. It’s a shame, really. The cost of medical supplies. I don’t know how people with chronic illnesses do it. Thank goodness for Amazon.

We won first place at trivia Friday night…I missed music trivia the week before, whoops!

Nothing else new to report. Had a cancellation at work today, so I’m hanging out at home, reading and writing, planning world domination. I really want a beach vacation. I had an awesome time at the Outer Banks a few years ago. I’d love to go back. Lots of AirBnB options there.

I’m going to sign off now, I’ll update more when I’ve got more to share. 😊

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!

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 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!