Making Strides Against Breast Cancer

Hello, hello!

Presently, I’m sitting in the backseat of my car while me, Brad, and his brother, Jeff, head to Charlotte for a concert. We’re going to see Breaking Benjamin (can’t resist one of their concerts if it’s within a 200 mile radius), Chevelle, Three Days Grace, Diamante, and Dorothy at the PNC Music Pavilion. It’s a three hour trip so I have plenty of time to marinate on the different ramblings in my head.

First, we’re doing the Making Strides Against Breast Cancer walk in North Charleston on October 27. I’m excited. Team More Than Ribbons is back! If you want to come walk with us, please do! I want lots of people to join! If you can’t walk but want to make a donation, that would be amazing!! Here’s the link to join our team: click here.

This is the second trip to Charlotte Brad and I have made this summer. We went up back in July for a book signing. We had a great time and even brought Barkley along. The little guy had to have surgery last month because he broke a tendon/ligament in his knee, so we didn’t feel right leaving him behind when he was recovering. He’s doing great though, it’s like there was never even anything wrong with him. Before his surgery, he was running around on three legs like he didn’t even need the fourth leg. Anyway, he goes for his six week post-op checkup next week. He’s a maniac though, so you’d never guess he had surgery.

We have a couple more weekend trips planned this year. We’ll be heading to New York for a book show next month, and West Virginia for another in November. We’re also entertaining the idea of heading to Universal Studios in Florida in October to do their Halloween stuff. Busy, busy, busy, but always looking for an adventure!

In other news, I’m taking the last two classes for my graduate certificate in the fall, beginning right after Labor Day. I sent my thesis proposal in to my adviser for feedback, and hoping to get the go ahead from him on that. I’d like to present it at a conference here in November, so that’s my completion goal. It’s my priority for the next two months, so hopefully that’ll get rolling soon.

At work, we had camp for our kiddos this summer. It’s always such a great time and it got me thinking about the long term. I volunteered to help my boss organize Social Saturdays at our clinic for our kiddos during the school year. This is something I’d love to continue to do in the future. I was thinking about what I want to do with my degree and certification once I’m finished and while I would absolutely love to continue to do home-based therapy with kiddos with autism, I think I’d also love to run a camp, too. It’s something that’s always been a little niggling thought in the back of my head, but not anything I thought I could really implement. But our camp at work has really inspired me and I’d love to do more. In fact, I’d love to start with a summer camp and grow into a year-round school for kids with autism. It’s such a long term goal, but it’s there, and when I get an idea in my head, I tend to aim high and go for it. (If you haven’t already figured that out, haha.) So I’m looking into special education and autism education doctoral programs to help make this dream a reality. I’ll keep you posted.

Ok, I’m getting a little nauseated from trying to be productive in the car and I still need to post to the More Than Ribbons website and make some fundraising notes.

xoxo

Happy New Year!

2019. It’s gonna be a great year. Lots of good things.

However, it’s off to a rough start.

First of all, Merry Christmas! I hope you had a wonderful holiday, I did. Brad and I spent the holiday with his family, and we went to the Festival of Lights, too. Here’s one of my faves this year.

After Christmas, I ended up with a stomach bug that lasted straight through Friday. It was glorious.

We went to the South Carolina Gamecocks bowl game in Charlotte over the weekend. Our seats were in the sky and the team lost miserably, but it was an experience I can cross off our 101 list, so that was pretty cool.

See that concrete wall a few rows behind us, behind that girl? That’s the back of the stadium. That’s how high up we were. I had about 15 minutes of vertigo/anxiety when we first arrived because I felt like I was going to fall the heck down.

Also, there was a little excitement in the nosebleeds. I didn’t see all of it, but from what I heard, some UVA fans were celebrating an interception and spilled some beer on some people in front of them, including some kids, and the father said something, and the UVA fan lady dumped her drink over his head. That I did see. Needless to say, security came and threw the UVA fans out.

On the way back from Charlotte, I ended up with a sore throat and fever. Body aches were insane. Being stuck in the car three hours was pure torture.

The sore throat stuck with me through New Year’s Eve, which was really fun since I had some great drinking games planned. I sat sober on the couch while everyone else partied, which is fine but it still sucked. For me anyway.

And guess what? I still have a fever. And guess what else? I’m pretty sure it might possibly be strep due to the white spots on my tonsils. Hooray!

Oh, and I can’t forget the other New Year doozy. We had to take Daisy to the emergency vet because she has had diarrhea and a distended stomach and was also very lethargic. Turns out it’s nothing serious, thank God, and she’ll be on some antibiotics and a special diet for a few days.

So tomorrow I’ll be heading to the doc. I should have figured it was more than a cold when days passed and I still had a fever a horrible sore throat. I mean, I can barely swallow solid food and it’s not getting any better. Boo!

So that was the end of my 2018 and the beginning of my 2019. It can only get better!

Right?!?!

SC ABA Conference

I had a great time at the South Carolina ABA conference in Greenville! I went with two of my co-workers, and we met our boss there. I always loved going to work conferences at one of my previous jobs. It’s so rejuvenating being around like-minded individuals and I always leave full of new ideas and feeling even more excited about my job.

I absolutely love my job. I know I’ve talked about it here and there, but I’m not sure if I’ve gone into detail. I am a Registered Behavior Technician (RBT) and I work with kids with Autism Spectrum Disorder (ASD) and other developmental disabilities. I’ve worked in this field for a year and a half, and pretty much anyone I talk to about it needs an overview. ASD is a developmental disorder; the key characteristics are social and communication deficits and repetitive and restricted patterns of behavior. ASD cannot be cured, but the symptoms can be treated (there’s still SO MUCH that is unknown). An RBT (me) is a provider of ABA therapy to children with the disorder. ABA (Applied Behavior Analysis) is the best evidenced-based practice for treatment of the symptoms of ASD. You can read up on more of this stuff at some of these websites: Autism Speaks, NIMH, or BACB.

Anyway, like I said, I love my job. I work with some amazing therapists and amazing kids. The job is so challenging sometimes, but it’s also incredibly rewarding. Hearing a child say his or her first words, respond to a request, make a request…there’s just no other word for it. It’s amazing. Being part of milestones in the lives of kids who are living with so many challenges is amazing. They’re not lucky to have me, I’m lucky to have them. I probably learn as much from them as they learn from me. They’re just incredible kids.

I’m currently a lead therapist, which basically means I’m a team manager. Each kid has a team that consists of a consultant, lead therapist, and line therapists. I started out as a line and was promoted to lead, when I had cancer no less. I have five kids at the moment, but am hoping to pick up another one in the spring. As lead therapist, in addition to providing line therapy, I also manage paperwork, graph data, do reports, and act as a liaison between the families, therapists, and consultants…a jack of all trades, really. I love the work and it keeps me very busy, which is great.

I’ve loved my job since the moment I started it. There are definitely high days and low days, but all days are great days. Initially, I felt like my job was great experience towards my graduate degree (first clinical counseling, then school psychology). I knew of ASD and ABA when I started, but I didn’t really understand the whole process, but I was willing to learn. Of course, I have a better understanding of it all now. Anyway, over the summer we did these Fun Friday social outings for the kids. They were so much fun. The kids loved them and so did the therapists. There was this one event where we took the kids to Little Gym. They had so much fun. It was wonderful watching them in their element. It was on that day that I realized I’d finally found what I wanted to do with the rest of my life.

So, for what seems like the umpteenth time, I changed my degree plans. Fortunately, I was in a place where I could just complete my education at The Citadel with masters degree in psychology. I have the course credits, I just need to complete my thesis. To become a BCBA (Board Certified Behavior Analyst), I also need to take a verified course sequence of six classes, complete experience hours (which I can do while I work, like a paid internship), and take and pass the certification exam (which is not terrifying at all).

Anyway, blah blah blah back to the conference. It was great. I’m excited. I love my job. It’s the first job I’ve ever had that doesn’t feel like work. I feel like I could learn about this stuff forever and I definitely want to work with these kids forever. I seriously can’t imagine doing anything else.

We learned stuff, met people, ate some yummy food, and just had a great time.

Now I’m home and exhausted and ready for bed! I’ll report back later after my pre-surgery vacation! One more week until my last surgery! Hooray.

F*ck Cancer

This is my super late post I made from the plane two weeks ago. Just got around to posting it. My bad!

I’m on a flight home from New York, typing this post into a Word document because I don’t feel like paying for the in-flight WiFi to connect to the blog. I’ll copy and paste it later. I was in New York for the wake and funeral for my Aunt Eleanor. She was diagnosed with cancer and we lost her quickly. I feel blessed that I was able to make the trip with my parents thanks to my sister’s frequent flyer miles.

It was nice seeing my family. I realized on this trip that it has been too damn long since I’ve seen any of them. And not just my family, but my friends, too.

I got to visit very briefly with my friend Melissa while I was there. She was so gracious to meet me at the hospital where I was visiting my other aunt and spend about fifteen minutes with me. I hadn’t seen her in twelve years. We’ve talked on Facebook and I tag her anytime I see anything that has to do with Buffy the Vampire Slayer because that was our thing years ago. Anyway, when I last saw her, she was pregnant with her twelve-year-old daughter, who I got to meet today. It’s crazy.

I’m not really sure what the solution is because I’m not made of money and certainly can’t afford to fly to New York with any type of frequency, and taking off days from work to make the drive just isn’t realistic either.

Speaking of which. Huge shout-out to my job and the people I work with because they are amazing. I mentioned in our group chat that I was going to see if I could find a sub for my Friday shift because I had a death in the family and wanted to see if I could make it out-of-town for the services, and they rallied and texted me before I could even do anything with a solution. Pretty amazing. I mean, I’ve worked at places where there was literally no impact whatsoever if I didn’t show up for a shift and received more grief over taking time off. Just one of the many things I love about my job.

It was really great seeing family, though. I hated that it was because of a funeral, but it was what it was. Maybe the next time it will be because someone got married or had a baby, which was the reason for the last three times I saw my family, which still sucks, but again…it is what it is. My wedding and Kerry’s wedding in 2008, then Kerry’s baby shower in 2012. I might not be able to visit New York every year, but surely I can head up there again in less than six years.

So blah blah blah, cancer sucks. We all know this. It has taken the life of yet another loved one. A woman who I always remember was so incredibly full of life. Always laughing and smiling. A woman who I hadn’t realized helped me learn to swim. This is something that was revealed to me through an old family video shared by my cousin Debbie.

I hate it, and it’s moments like this, when I’m reflecting on someone else’s journey that didn’t end positively, that I realize how lucky I am to have gotten through my cancer. Not everyone is so lucky.

As a survivor, I feel like I need to do good things with my life. Make some kind of an impact. Big or small, I don’t know. Just something. One of the reason I’m doing the fundraiser for Susan B. Komen and why I will likely do more fundraisers in the future. I know I don’t owe anyone anything. I know that. I know I’m not responsible for anything. But losing people you love hurts, and if there’s just one thing I can do to help ease that suffering for someone else, why not do something?

So enough deep thoughts for now. Our trip was crazy, an absolute whirlwind. I’ve literally been on this plane for like 4 hours already and the flight is only like one and a half hours long. We sat on the tarmac for nearly three hours at LaGuardia. Bananas. But we’re almost home now…

Post-Vacation Blues

I had a great time on vacation. Getting to spend some time with Brad without work and doctors and having to adult was wonderful.

I ate three burgers (one of the restaurants at the resort has the best burgers I’ve ever had in my life, no lie) over the course of the week. That’s about two more burgers than I’ve had so far this year. They’re so good. If you find yourself at Orange Lake Resort in Kissimmee, hit up Legacy Grill for a Smokehouse Burger. Ah-mazing.

I also ate way too much chips and salsa at Chuy’s, and let’s not forget the margaritas. Yum. I had bought Malibu rum because that’s sort of my go-to alcoholic beverage – I like it in Diet Coke or fruit juice. But I had a margarita at Chuy’s, then cheap margaritas at the resort during happy hour, and I fell in love. I think tequila does that to you. Well, I guess it’s a love/hate thing since tequila kicks some people’s butts.

I read, was totally lazy, and drove the cart while Brad golfed one day. It was a nice time.

So I’m home and this week is back to reality! I’m happy to be home with my pup, she missed us and we missed her. I think our best vacation ever was when we went to the Outer Banks and were able to take her with us. Pets deserve vacations, too.

I had an oncologist appointment this morning, got my Herceptin and Lupron. Nothing new to report there. Everything is “normal” there.

I’m returning to work today for real. I’ve got a few line therapy sessions this week, and I’m looking forward to that.

So I’m feeling good and healthy. I’ll be thankful when the rest of the soreness is gone. I’ll also be thankful when I can start exercising again and lose this ache I’ve got in my joints again. I hate that I went steps forward and then steps backward in regards to activity, but I know that extra strength I built up before surgery has helped me a lot over the last several weeks.

Being at the oncologist now is weird. I remember going and dreading what I knew was to follow. I don’t have that anymore, which is great – not complaining over here! It’s just weird because I’m in and out of there, and I used to see some of the same faces, but now there’s often new faces in various stages of treatment, and it’s weird. I want to say something, something motivating, because I was where they were, but I don’t know their story. I don’t know if they’ll be where I am now one day, or if their situation is more dire. So I don’t want to pull something straight off one of those top-ten-not-to-do lists for cancer patients. So I just keep to myself and smile.

But I want to do more. One day I was there and someone had put together little comfort packages and handed them out to all the chemo patients. I think I’m going to do something like that. Put together a list of things that truly gave me some comfort during my chemo and make little care packages to hand out. There are other, grander things I’d like to do, but for now this might just do. Little things mean a lot, at least they did to me. So maybe these care packages will brighten someone’s day.

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!

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.

Chemo & Weight Loss

I think a lot of people associate chemotherapy with weight loss, or cancer with weight loss, I know I did. For me, it was because I’d known someone or seen someone with cancer or going through chemo who had lost weight. I think I applied that experience across the board, which is one of the reasons I was so concerned about being able to eat in the beginning.

So, one thing I’ve learned and talked about is how chemo and cancer are not a one-size-fits-all experience. There’re different kinds of cancer, different kinds of chemo, and different kinds of people.

The last few days I’ve been dealing with swollen ankles and feet. It’s been annoying. I think it’s because I was horizontal for so long, and taking things slow, and now I feel good and am being more physical, staying on my feet for longer periods of time, sitting upright…so gravity is doing what it does and pulling fluid down to my feet. Once I put my feet up, it dissipates.

Anyway, the swollen ankles have made me think about how I didn’t lose weight with cancer and chemo. I did lose 10 lbs the first week of the first cycle because of the taste/texture issues I was having. Once I took the nausea meds and found ways around those taste/texture issues, I gained that weight right back and didn’t lose anything again. I may have even gained weight, but I’ve only ever been weighed on the doctors’ scales through all this, and I swear those things are on a whole different frequency.

So yeah…I could stand to lose a few pounds, and now that I’m well, I’ll definitely be heading to the gym. But I don’t want to lose too much weight in my mid-section, because they need that fat to refill my chest after the mastectomy! Pretty cool deal. 😉

Fun fact: there’s a Billy Joel channel on Sirius XM…30…I’ve often prided myself in being able to name Billy Joel songs within the first few notes. Turns out I can name them before they even get played, too! He was talking about the story behind the song and I guessed the title, and I was right!

This weekend Brad and I trekked to Baltimore, MD for a book signing. I had a great time seeing my sisters and book friends (Hi Jennifer!), making new friends, and going to the movies. We’re actually driving home as we speak. It’ll be nice to be home! I’m sure Daisy missed us (not!).

That’s all for now!!