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

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.

It doesn’t have me…

I read something a while ago and I may have mentioned it here already, or I may not have.

I have cancer, cancer doesn’t have me.

It was one of the mantras that sort of pushed me through everything. Knowing that I was the one in charge, it helped.

This generalizes to other areas of life, you know? Other diseases, disorders, and disabilities. Those Ds are not what define us. We are what define us.

I recently heard someone use the word “autistic,” and I realized in that moment how much I hated that word. I’m sure I’ve used it myself at some point, we all probably have, but ughhhh I hate it.

Why do I feel so strongly about an adjective?

Because adjectives are descriptors. Adjectives are used to help paint a picture of something. My hair is brown. My dog is chubby. This guy is tall.

That boy is autistic.

What exactly are we saying about the boy? We’re using a word, a disability at that, to define him. I feel like calling him autistic is like saying that’s all there is to him.

Yes, for people with autism, it often does define so much of their life. So much of their family’s life, too. But it’s a disorder, and who wants to be described that way?

That boy has autism.

That sentence says the same thing, but I feel like it’s empowering. He has autism, autism doesn’t have him.

It’s probably safe to say that most people who know someone with autism hate the disorder but love the person. So why use that as a descriptor?

Sorry for the rambling, but it’s just something that came to me when I heard that person say that. Maybe it doesn’t make sense at all, maybe it does.

On a side note, for those of you who don’t know, I work as a behavior technician and provide ABA therapy to kids with autism, hence the reason I feel so strongly about it. I’m actually pursuing certification in behavior analysis so I can make a career out of helping these amazing kiddos.

Last infusion is tomorrow, folks! Woohoo!

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.

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!