Seasons Greetings

I’ve wanted to pop in and say hello for a while and kept forgetting. Thank you, chemo, for the short-term memory loss. And, you know, for still being alive and all that. I have so much to update!

I’m still cancer-free. YaY! I’ve been to my oncologist, gynecologist, and my breast surgeon for regular exams and all is well. I’m still going every four weeks for the Lupron shot and taking the Femara. That’s where I’m at with all that.

I’m still volunteering with the American Cancer Society’s Relay For Life. I’ve decided not to do the golf tournament again this year. I might revisit it next year, but this year I’m volunteering for the event. The local director would like for me to be a community champion and try to recruit some teams and sponsors. I’m excited to give it a whirl. I forget that I worked in a small marketing and development role for quite some time at a previous employer. I’m excited to pull those skills out of my bag and use them again.

On a sad note, we lost another friend to cancer this year. On Halloween, our friend James passed away. He would have been 40 in January, I believe. He left behind a wife and two daughters. He was such an amazing guy, the best kind of friend. It really sucks that he’s gone. Like the sun got a little bit less bright in so many lives. It was actually kind of special that he passed on Halloween because it was his favorite time of year. If he could have picked a time to go, it would have been this time. We’ll miss him every day.

On a happy note, I just submitted my last exam for the Verified Course Sequence for BCBA certification! I still (STILLLLLLLLLL) need to finish my thesis so I can finish my Masters, but that’s okay because I need to finish accumulating my supervised independent field work hours, which will probably take me through March. I need 1500 hours and there’s a lot that comes into play with what’s acceptable for experience hours, so I end up with anywhere from 80-100 hours a month. So I’m hoping to have everything I need completed by the end of the spring semester. Then I’m going to study my butt off over the summer so I can take the certification exam. And fail. Like 900 times. Seriously, I have so much test anxiety.

No travel planned for the immediate future. Our last trip was to West Virginia, Staten Island before that. The drive was absolutely gorgeous, through the mountains. Makes me want to walk the Appalachian Trail. With a weapon, of course. For the creepers.

We went to a hockey game recently. It was Hockey Fights Cancer Night at the Stingrays. We had a really nice time and want to try to make it to some more games this season. They won, too, which made it even better! What else? My entire family was here for Thanksgiving, so that was fun. I always enjoy seeing my nieces and nephew. I’ve started a mug collection…thank you, Marshall’s. It started with one, “Make it Happen.” Then there was, “She believed she could, so she did.” And then there were cats, and Peanuts, and Nightmare Before Christmas, and…you get the picture? At less than $5 a pop, it’s hard to not buy one or two whenever I’m in Marshall’s or TJ Maxx.

Oh! Brad and I did the Making Strides Against Breast Cancer walk in October. We had a nice time at the event. Our friends Chanda and Ms. Beth joined us, which was great.

I feel like I’m forgetting something I wanted to share and as soon as I hit publish, I’m going to curse. I guess that’s all for now. I’ll try to pop in more frequently and share a little bit more about Life After C.

❤ Jen

Chemo Brain Revisited

Today I realized the importance of the after c part of this blog. I thought all the important stuff was in all the during posts. I couldn’t have been more wrong.

I worked this morning, then made lunch before I had to go to an appointment with my oncologist. As I was putting my sandwich together, my phone started to ring. It was one of the universities I requested information from, and I wasn’t going to answer. I wanted to eat my lunch in peace. But I hadn’t picked up the last couple times (because they always called me when I was at work), and I really wanted to talk to them, so I picked up.

So I answered, and we talked about the program I was interested in. I talked about my goals with finishing my masters, including my thesis and graduate certificate, and then my plans of taking the BCBA certification exam. I mentioned how I wanted to take next summer to focus on studying for the certification exam, and didn’t want to start any new education programs until the fall, at the very earliest, assuming I pass the certification exam on the first try.

I told the guy about how I was apprehensive about the certification exam because I still struggle to read and retain information due to chemo brain. That tiny little statement changed the entire course of our conversation. It turned out, the guy I was talking to is also a cancer survivor. He told me that he knew exactly what I meant about the chemo brain, and told me that he talked to his oncologist about it when he experienced it, and his oncologist made recommendations that assisted him in overcoming it. I won’t mention what his oncologist’s recommendations were, both because he had a totally different cancer and the actual treatment was irrelevant. The point is that just because my cancer is gone doesn’t mean there aren’t still going to be things that I should consult with my oncologist for.

I thought chemo brain was just something I was going to have to live with. I play games, try to read, and otherwise keep my brain engaged as often as I possibly can. I thought that would help exercise my brain back into shape. I didn’t know they were other options. Now I do.

And I think it’s important to share this information because other people might feel the same way. They may finish their treatment and think that there’s nothing else they need to do, or that there’s nothing else they can do, because the cancer is over. That’s simply not true. And these are things I may not have even considered if I hadn’t picked up the phone.

So at my appointment today I talked about two things. One thing was the chemo brain, for which he referred me to a neurologist. Dr. YB said the neurologist might have different activities and exercises for me to do to help alleviate the symptoms of the chemo brain. The second thing is the aching in my toes, feet, ankles, and knees. Whenever I get up after sitting for a while, I struggle to get moving and am so sore in those areas. Dr. YB knew exactly what I was talking about and said it was a side effect of the hormone blocker. He advised me to stay off it for two weeks, then resume for two weeks, and see how I feel. If it is the hormone blocker, then we may switch to Tamoxifen. So I’ll report back on that.

We talked about some other things, and I’ll share more about that in another post!

It’s the little things

I think I’ve used this title on a post before, but it still apples! It always applies. Sometimes the littlest things mean so much.

The polish on my toes had faded pretty badly, it was also Christmas themed, so ta-da! I went with something bright and sparkly, something happy that would remind me that spring is coming.

It also reminded me that I am badly in need of a pedicure. Chemo dried out my skin so horribly and I swear my feet suffered the brunt of that. They’ve also become super sensitive and ticklish, so having someone touch them is going to be interesting. In the meantime, I’m gonna get my foot bath out of storage and soak in some Epsom salts.

Still one drain…story of my life.

I had two drains removed yesterday, the ones in my chest, which is great because they were sore and itchy and nobody liked them. Ha. Seriously, though. I was so aware of those two. I kind of figured the belly one would stay, so I’m not surprised. I’m not even that annoyed about it, except this whole shower thing, but I’m about to bust out some plastic wrap so I can shower. Not even kidding. Shh, don’t tell.

I’ve had a BM since I last posted. I know that makes you as happy as it makes me. I’ve slowed down on my water drinking and I know that’s part of my problem, so I’ll pick that back up. Also, the anti-nausea meds can cause constipation and since I’m not taking oxycodone anymore, I’m not taking the anti-nausea meds anymore. I’m also getting a little annoyed that constipation isn’t coming up on the predictive text on my iPhone and I have to spell it out every time. It’s a long word, Apple, get with the program.

I’m working my way into my new food plan, and healthy eating is making me feel good. Yay! Should regulate some stuff as well. This time I’m doing something a little different, which I’ll talk about later, just to give it a try. So far I love it, and we’ll see if I have results. I also can’t wait to get this drain pulled so I can exercise, but for now it’s walking!!

That’s all the update I’ve got for today, so I’ll share more when I’ve got more. 💜

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.

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.

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!

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.

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!