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. 😉

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!

Caution: Incision Photo Ahead

Yeah, so I’m just warning you, it’s a little bit gross. I’m including this adorable picture of Daisy from the Fourth of July so that it will be the preview picture, rather than my busted gut, in case anyone doesn’t want to see it. I don’t want to just toss it in your face (unless you’re my sister, Tracy, in which case I live to gross you out!). Actually, before I show my busted gut, I’ll share a modest image of my flap.

It kind of looks like a baseball from this angle, which is sort of appropriate considering baseball is on nearly 24/7 in my house.

Ok, so the flap (my belly skin) is the part in the middle, inside the circle of stitches. The far left and far right (other sides of the stitch scars) is my actual breast skin. The next surgery I have, the one in September-ish, will take that flap out and re-join the breast skin. There will be a cleaner scar line there once that is complete, right down the middle.

Just to reiterate, that flap is there because it’s connected to the fat tissue they transplanted from my belly. When they transplant the fat and flap, they connect blood vessels and hope it takes. If it doesn’t, the tissue will not survive. It’s done that way so that, through the flap, they can monitor whether the fat tissue underneath is still alive. If the flap begins to show signs of necrosis, then it’s likely the fat tissue inside is dying as well.

Enough about that! On to the nasty…

So here it goes…keep in mind that even though it looks nasty, it is healing well and actually looks “good” in the eyes of the surgeons, and my live-in nurse, aka Mom. Often these types of incisions can’t handle the pressure of being pulled so tightly together, so they pop open, hence the gaping holes. Then they’ll heal from the inside out. So inside the holes, they are healing, and the yellowish stuff that’s there is sort of like a scab, it’s just moist because it’s inside and not drying out like a scab would do on the outside.

Also, pardon the irritation above and below. My skin is super sensitive as it is, and me swapping out bandaids every so often isn’t helping it one bit. I’m actually supposed to leave it uncovered, or covered with Vaseline on it, but Vaseline gets on everything and leaving it uncovered just feels like I’m asking for an infection.

So that’s what I’ve been dealing with for the last two months. Ignore the blood on the left side…I thought I was pulling off a piece of dead skin and clearly I was not. I’m such a picker, and I can’t leave well enough alone.

Anyway, it’s not as bad as it looks. Truly. It’s healing quite well, and hopefully will be completely closed very soon! I’m kind of glad the scab fell off because, believe it or not, it looked worse with the scab! Yuck.

And, for the record, it does not hurt. It looks like it should, but it doesn’t. Not one bit. The nerves in that area were knocked out of commission during the surgery and have yet to fully heal back. I am slowly regaining feelings around the surgical areas (breast and tummy), but it’ll probably be a while before it’s 100%. Which is fine by me, because I don’t want to know what that feels like!

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.

Chemo Care Package Items

Someone asked if I’d share the list of items for the chemo care packages I am going to work on putting together. This is a rough list, but it contains things that gave me some relief, pleasure, etc. during my chemo treatment. I’m not sure that everything will make it in a donation bag since I’m not independently wealthy, so if anyone wants to donate any items, I would not say no! As I mentioned in a previous post, I plan to donate chemo care packages to chemo patients in the Charleston area.

Also, if you have a loved one going through chemo and want to gift them some items, this is a great starting point.

Chapstick (plain/unscented/unflavored) – My lips were dry and chapped through most of my treatment, even now. I say plain, unscented, and unflavored because smell and taste aversions are a real thing! I was ready to move out of the house when Brad cooked bacon one day, no joke.

Hand lotion (plain/unscented) – My hands peeled and got all crackly. Bonus points for a full body lotion! My entire body was flaky. Attractive, I know. Feet, too. Same scent rules apply.

Nail file (with a fine edge) – My nails got brittle (some chemo drugs cause nails to fall completely off, too), so having a nail file in my purse was a tiny little miracle.

Hand sanitizer (plain/unscented) – You know…germs and all that. Shouldn’t need to explain this one. Scent rules apply.

Biotin Mouth Rinse – This was nice to have. And Listerine (alcohol free). I got horrible cotton mouth, and sometimes I had the absolute worst taste in my mouth and thought I’d lose my mind.

Warm socks – Because who doesn’t like fluffy socks? I’d actually put fluffy socks on during chemo just so I could take off my sneakers and still protect my feet. I mean, you were sometimes spending the entire day there, might as well be comfortable.

Cup-a-Soup – There were days when I couldn’t eat or didn’t want to eat real food, so cup-a-soup was a nice alternative to plain broth. I could actually stomach it.

Tea (caffeine free) – A nice alternative to water. It was soothing for my throat when the dryness got to be too much.

Peppermints/Starlight Mints – Mints sometimes helped with the cotton mouth/bad mouth taste. It also helps during chemo when the nurses inject saline into your port…you can actually taste the saline in your mouth, oddly enough. So if you’re sucking on a peppermint, it masks that taste.

Puzzle book (word find, crossword, etc.) – Not only did puzzle books keep me busy during chemo, but they also helped work my brain while not at chemo. My oncologist actually told me to exercise my brain with crosswords, word finds, and stuff like that when I mentioned chemo brain to him once. So these are great.

Notepad – When chemo brain started affecting my memory, I started writing everything down! Whether it was notes to ask the doctor, a to-do list, or a shopping list, having a small notepad in my purse helped.

Pens/pencils – To use with the notepad and puzzle books, of course.

Deck of cards/card game/travel games – Brad and I played Phase 10 during my first chemo treatment. It was fun for me and him, and it kept our minds off what was happening, even if it was only for seconds at a time. So playing cards or travel games (smaller, portable versions of Checkers, Clue, Yahtzee, etc.) are a great addition to have on chemo day.

Adult coloring books – These are probably a take-it or leave-it for most folks. I liked my adult coloring books. I liked variety. I am an avid reader, I love to read, but I couldn’t focus enough (tired, chemo brain, etc.) to read books, so having lots of non-reading alternatives, was great. The adult coloring books just gave me one more activity to choose from.

Colored pencils/markers/crayons – For the adult coloring books. I went all out and bought myself this ridiculous package of 100+ gel, sparkly, metallic, and milky pen set. But seriously, a small set of colored pencils or crayons would do. I’m a little extra.

Bag to put it all in – The size bag depends on the quantity/size of the stuff you get. I had a few different tote bags, and I think totes were the best. And not necessarily anything fancy, like a reusable grocery bag style is perfect. I have one that had a breast cancer design, and another that says “Warrior.”

Refillable water bottle – Optional, since most people already have plenty of these. But I would get super thirsty while there and always brought a water bottle.

Blanket – Another optional item. I brought a blanket a few times, but often the clinics have them, too. So if you find a really nice one, I’m sure the recipient will love it. Otherwise, it’s not a big deal.

What not to gift…

Scented anything. Unless someone specifically requests something, I’d go with unscented everything. I was gifted a lotion that was plain, but it had a very distinct scent that made me so nauseated.

I would avoid food or snacks unless you’ve spoken to this person and they request something specific. Certain flavors and smells can be a total turnoff, even with beverages, so just be careful.

Books. I hate saying that because I LOVE BOOKS, but if anyone has the chemo brain concentration problem I had, books might be upsetting if they can’t read them. Again, if you’ve spoken to someone and they can read/want to read, gift them books!!

 

If I think of anything else, I’ll add them to the lists, but for now, this is a huge start. And please keep in mind, these are all based on my opinion, my experience, and everyone’s experiences are a little bit different. I’d like to say the items on the “do” list are pretty universal, but you never know. There are some people who may break out in hives at the sight of a crossword puzzle…

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…