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!

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…

Advice: Fit for Surgery

Whenever you feel well enough, exercise. This was a huge help for me before my mastectomy. I finished chemo in January and started to feel human in February. In March, I started exercising and eating well again. It may not seem worth it to exercise for such a short time (I had about 6 weeks between feeling good and my surgery), but it has made a huge difference.

Squats are fantastic because that’s how you’re going to want to sit down/lower yourself onto a chair or the toilet.

Overall leg strength is also so important because you can’t use your arms except for some no pressure balancing. You’re going to want your abs to be strong, even though they’re going to feel sore. They’re probably not actually sore though, it’s just the belly skin pulled tightly. You’ll need your abs to shimmy into position when you can’t use your arms, and you’ll need them to sit up, lay back, and gain balance.

Of course you can do these things with assistance, but you are eventually going to have to do it alone, and that’s a good thing, as long as you’re not pushing yourself with too much, too fast. But if you’re anything like me, you’re going to want your independence back ASAP.

Listen to your body, but don’t be afraid. I was terrified to sit up because I thought my gut was going to come out. It’s irrational, but the thought was there. That’s the kind of afraid you don’t need to be. Your gut isn’t going to fall out. Not even when you cough.

Don’t over do it, but don’t be afraid to try.

And of course, the sequence of your treatment or your physical condition may not allow for exercise. You may feel like garbage all the time, or you may have your surgery immediately, with no time to prepare. You may not be able to or even want to do it the way I was able to, but if you can even just squeeze in some walks or squats or lunges, you’ll thank yourself later, trust me!