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!!

One month

Quick update because life is crazy.

Saw Dr H on Monday. GH is getting smaller, he said everything is looking good and wants to see me again in a month. So I’m slowly graduating to longer and longer gaps between visits, which is nice. It’s likely that at my next appointment, we’ll schedule the surgery. He didn’t say that, but I’m guessing that. He did say again that he wants to wait for the right nipple area to heal, and the skin is still working itself out over there. So hopefully in a month, that’ll be done and we can get moving.

I also saw Dr YB on Monday. All is good there as well. I got my infusion and my shot. Only one more infusion to go! Woohoo! So things are lining up nicely for me to have the port taken out when I have the flaps removed.

I’ve got a backlogged post that I need to put up. It’s something I wrote this past weekend on my whirlwind trip to NY. I didn’t pay for the WiFi on the plane, so I couldn’t post it then. I’ll get it up in the next couple days.

Overall, I feel good! Still having problems with my feet, but that’s the only place I’m sore. Incision and breast don’t hurt, still pretty numb in those places because of the nerves. I feel pretty “normal” though! So nothing to complain about here.

I’ve got a fighter friend who is having her flap DIEP mastectomy tomorrow! Please keep her in your thoughts and prayers over the next few weeks! Best of luck to you, L!

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.

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.

Draining, draining, draining…

Dr H took out about 90 CCs on Monday (took me long enough to post, sorry!). It was less than before, which is good, and not as uncomfortable, which is great! He is probably going to have to keep draining me, but we’ll just take it one week at a time. I asked it there was anything I could do aside from thinking dry thoughts (I need to stop making jokes there, they don’t know what to do with me), and he said there was nothing, he just should have left a drain in, but he knew I was going on vacation…ehh, I would have kept it if I had to, but this (needle draining) is getting easier.

Everything else is looking good. My tummy incision is moving right along. Two parts are slightly gaping open, so I hold them together with butterfly bandaids. It is healing from the inside out, which is weird, but whatever. The scab finally came off, which is actually kind of nice because the incision site looks cleaner, despite the fact it’s an open hole. My right nipple is scabbed and slowly healing (aka preparing to fall off), but it’s doing what it’s supposed to do as well.

I asked about my next surgery (removal of the flaps and nipple reconstruction) and Dr H is thinking roughly September. I lost some skin around the right nipple area, so he wants to make sure it’s fully healed first. So it’ll be a little longer than the original three month wait. This is a good thing though, because I should be able to have the port removed at the same time, since my infusions will definitely be done by September. That’ll knock one surgery off my list! Yay. It’s hard to believe I’ve had three surgeries in the past year. It’s hard to believe a lot of the past year!!

Non-medical update…Brad and I had a nice Fourth of July with his family and some friends. I had too many Lime-A-Ritas, but I think their effects finally wore off after I had McDonalds for lunch. I needed the grease! Well, I probably needed water more…but whatever. Lime-A-Ritas! Yum.