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! 😉

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!

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.

So that was fun…not!

I had an appointment with Dr H and Dr JB yesterday. Everything looked pretty good, the incisions are still healing nicely.

But something had started happening over the last week. I was feeling a little bloated, and when I pushed down on the bloat on the right side of my belly, it would sort of ripple towards the left side. Like a wave… better yet, like a water bed.

I showed them this today. I was pretty sure it was fluid, but maybe it was gas?

So they did an ultrasound, and sure enough, there was a lot of fluid in my abdominal cavity.

Dr H said he was afraid we may have taken the drains out too soon. Well, he wanted the numbers to be under 30 CCs and they were, so that’s why the drains came out. I Googled, and some docs take their patients’ drains out at 40 and 50. So I’m kind of not sure what the proper solution would have been with that.

Granted, I wouldn’t have been happy to be traveling on vacation with the drains, but if I needed to have them in for my health, then they would have stayed in. Period. So I’m not sure how I feel about that, but what’s done is done.

So I was drained today with a huge needle, and several stabs on my left and one on my right. He took out about 190 CCs of fluid. That’s like a cup of fluid, check your Pyrex! It’s an average of 11 CCs a day since I had the drains removed on June 8th. Of course, I’m sure there was a gradual decline, and I’m not still producing that much. I’d be surprised if I need to be drained again next week, but he seems to think so.

It hurt. I’m still a bit numb around there, but the needle pinched the skin pretty bad. I don’t want to have to do that again.

Please send dry thoughts my way…

Free at last!

I finally got my last drain out today! Phew!

When I went to the doctor on Monday, I was still draining too much. I had to go below 30 and I was around 35/40. So I willed all the good energy and whatnot around me to make the numbers go and stay down, and they did. I was able to squeeze in an appointment to have them removed before we left for our vacation today.

I kind of don’t know what to do with myself without it. I’m still accommodating for it…pulling my shirt down on that side, making sure I have some extra space over there.

I was afraid it would hurt coming out since it’s been in there for a month, but it didn’t. It hurt a little when Dr H snipped the stitches because it had scabbed, but other than that I didn’t feel the tube come out of my belly or anything.

I worked a little this week doing some paperwork stuff for the kiddos whose teams I’m managing this summer. It was nice to get out of the house and feel like a contributing member of society again. And seeing the kids is always great! I’ve missed them.

So we’re on vacation this week! Driving down to sunny Florida as we speak. Well, we’re in rainy Georgia at the moment, but we’re ending in sunny Florida!

Shout Out to the Nurses at ECMC

I generally try to keep things anonymous when it comes to service providers and people I come into contact with in my journey. None of those people ask to be documented in my saga, so I leave them out of it. My family is stuck because if you know me, you know them, but I do try to abbreviate their names as well for the same reason.

Anyway, I spent almost four full days at East Cooper Medical Center when I had my bilateral flap DIEP mastectomy. During that time, I had some amazing nurses and techs. I don’t remember too much before surgery, or immediately following surgery, but those who were there in women’s services for the bulk of my stay were fantastic!

Five stars!!

They just did so much to make sure I was physically and emotionally comfortable. Which was great considering I was so vulnerable, which is a hard place for me to be, and they had to deal with me 12 hours a day.

So kudos to them!

I’d go back.

Three down, one to go…

So this is a little late, but I had my follow up appointments with Dr H and Dr JB on Tuesday and Wednesday.

Dr H – Drain removed from left hip. Hopefully right hip drain will slow it’s roll, and the numbers will be low enough for it to be removed at my appointment on Monday. Seems like I’ll be losing my right nipple, it’s back to its black color regardless of the ointment/Vaseline. I’m ok with that. Dr H said we can reconstruct that later on, if I want to. My tummy wound is opening a little bit, but not a lot. (Seriously don’t Google it!)

Dr JB – Pretty much said the same stuff as Dr H. I did ask about these tiny little blister bumps I have around my chest. It seems that the surgical bra, that I have to wear like all the time, is irritating my skin. Yay! So I’m trying to give myself breaks from it, and I’ll wear a tight tank top to keep things contained instead. They also recommended lotion for the rash.

It’s just been a blah week for me. Lots of emotional ups and downs. I’m ready to go back to normal, you know? This has been dictating my life for several months, and I want to dictate my life again. I want to be able to go run errands and not be exhausted. I want to work! (Which I’m doing a little of next week whether anyone likes it or not!)

The week after next we go on vacation. I’ll be chilling poolSIDE for a week, unable to actually get in the pool due to my wounds not being fully closed. When we get back from the trip, I plan to return to work. I’ll have an appointment with Dr YB for my infusion and Lipton shot Monday the 18th, and I’ll probably have a follow up with the surgeons that same day.

I’m anticipating being in much better shape by that point. I think the key is going to be doing a little each day and gradually building myself up. I think I’m being too sporadic, and that’s the problem. Like going 75% one day, 50% the next, then 100%, 0%, and then back to 50% isn’t helping. It’s inconsistent and I think it’s confusing my body. So I’m going to try to start small and keep going up. I don’t feel like I’m pushing myself too far, I just feel like I haven’t been building myself up, I’ve just been randomly diving in, depending on my mood.

Anyway, something else to note is that I haven’t had much of an appetite post-surgery. I’ve had hunger, but I’m not 3-square-meals hungry. Like it’s after 1, I haven’t eaten, and I’m not even a little hungry. So, needless to say, I haven’t been sticking to my eating plan. I’ve been trying to focus on protein when I do eat, since I know I’m not getting a good sampling of nutrients and that’s the key nutrient for healing. I’m certainly not starving, I do get random cravings throughout the day and snack. I get late night cravings, too, and I have healthy snacks like fruit. I always eat dinner, it’s just breakfast and lunch are sometimes a wash. I am also having my Shakeology every day, which helps with protein and other nutrients. So hopefully my appetite will sort itself out soon and I can get back on track with Portion Fix.

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.

Plastics Post-Op

I went to see Dr. H on Monday for my post-op. He said everything is looking very good.

He removed the upper drains (yay!), and left the lower. I have another appointment next week and those will probably come out then. They’re still putting out enough gunk to keep them around a bit longer, which is fine by me because they weren’t hurting me the way the chest drains were.

My right nipple needs to get it’s act together. It was super dark in the hospital, like almost blue-black, and it has since lightened, significantly actually, due to me applying lotion to it on the regular. Apparently that’s not uncommon. The left nipple is a little blistered, but again not unusual. That one gets some ointment. So I’d like for them to go back to normal, any day now. That’d be great. 👍🏻

The tummy incision is doing fine. There’s a spot in the center that is likely to experience necrosis. Again, not unusual. Apparently when the skin and tissue is pulled super tight like that, it’s possible that there will be an interruption to blood flow, causing some tissue to die. So basically if it dies, they’ll take care of the wound (removing nasty tissue), pack it, and just keep taking care of it until it heals. He said that whole process may be a month. But we’ll watch and see what happens because the only thing I know with certainty is that anything can happen.

I felt a slight pinch when the drain was pulled out on my right side, otherwise I honestly barely felt it. I was also still on the cycle of pain meds, so there’s that. I felt nothing on my left side. Didn’t even feel weird. Wounds were covered with a bandaid. No big deal.

Kind of bummed about the possible necrosis going on around my gut because my already slim chance of being able to hit the pool when I go to Florida just got slimmer. So boo on that, but I’m alive and cancer free, so that’s pretty cool, too.

I think that’s about it as far as updates go. I can’t think of anything that’s occurred over the last couple days that’s worthy of mentioning.

Oh, there is just one small thing.

That small little chart is of my bowel movements since being released from the hospital last Sunday. Holy medications, people! Needless to say, I’m working on softening that stool on a regular basis.

I will say one thing though. Before cancer, I prided myself on my regularity. I’d eat, poop, eat, poop, etc. Then chemo happened, and I never thought I’d see a solid crap again. Then after chemo things started to get tougher (consistency, not physical strain), but still not exactly solid. But now…things are solid. This is noteworthy stuff right here. It might not be occurring as often as we’d like, but it’s occurring!