So it’s been awhile.
I took the hint to update the #takethatbenedict blog when I kept getting this question over the past few weeks “So, what’s the status with the shrinkage?” When taken out of context by a perfect stranger, that had to be a really hilarious statement to overhear.
The answer: No update! I’m still on the Xalkori–just finished 5 months of treatment and now amidst month 6. There is no end date in sight yet.
I get CT scans every 3 months and my next one is March 7. I can hardly believe it’s already almost here. I’ll see Dr. D’Amato on March 9 for the results.
What am I hoping for? Obviously more shrinkage!
If Benedict continues to shrink, we’ll likely keep me on the Xalkori and go until a point until he plateaus. Then we’ll decide what is next: radiation? Surgery? Both? Either way—and so many people have been asking—YES, I will still have to have surgery and NO, it is unlikely he will totally shrink away completely with the medication. The only cure is surgical resection. We want him completely evicted.
I had a little Benedict-related scuff that turned out to not be related to Benedict at all. Back in mid-late January I started to get some funky rib symptoms in my right upper chest—pain, burning, achiness. This is where things get confusing for me as the patient. Why? Because I have some neck and shoulder issues and they’re right in the same area as the tumor. So that makes it tough to decide “to freak out or not to freak out?” when symptoms start to show up.
So I did what any rational, logical person would do: I
remained calm freaked out. Of course this meant that Benedict had stopped responding to the Xalkori and was growing out of control. Right?
Of course I then did what any person who has been kicking ass on self-love and self care over the past year and a half: I stopped myself from freaking out the instant it started, gave myself a hug, and called Dr. D’Amato’s office. Why? Because it’s better to let someone else decide if we need to freak out or not. Her nurse, Angela (who is a badass rockstar, by the way), and I talked it over and decided it was better to err on the side of an abundance of caution and get a quick chest x-ray. Any other person would likely have been told “eh, it’s just a muscle/nerve issue. Go to PT” Ok, maybe they wouldn’t have been referred to PT by most doctors, but they should have been in my opinion. That’s another blog for another day.
But anyway-with sarcoma you just don’t mess around. Ever.
So off to Northside I went—my first trip back since falling on my face in August. What lovely renovations they’d made! Got a quick photo taken of my lungs and I was on my way. NBD. Just a small detour in my Friday afternoon and a quick reminder that amidst how well I’m feeling, I do, in fact, have cancer. The good news is the x-ray (granted, it was only an x-ray) showed no growth and nothing crazy happening in my ribs. So we can confirm it was my usual muscle/nerve mess. God bless my physical therapist ;-).
Enough about Benedict. He’s gotten too much air time in this blog. So as for me…let’s see…
I’ve otherwise been feeling great!
If you hadn’t heard, I’ve been plenty busy and distracted getting on with my life AND doing it with a bang, I might add.
So many exciting things going on:
- I started my own business! It is called Performance Rehabilitation & Integrative Sports Medicine—or PRISM Wellness Center for short. I’m pumped! I have designed a business plan that fits in with my own health and wellness goals and allows me to do exactly what I want with patients and clients. I am seeing PT patients and Pilates clients, teaching wellness and fitness classes and workshops, PT and Pilates professional development courses and designing an element to the business that is completely online—both through online consulting sessions and e-learning for both the consumer and the professional. I am targeting my 2 wheelhouses: young athletes and young, active families (that means growups) and loving it so far. And best of all-I’m working from home for the most part. Literally! I’m seeing some clients out of my home and the rest out of one of 2 beautiful Pilates spaces across town: one in Decatur, GA and one over here on the Westside of Midtown near me. I’m eternally grateful to Heather King-Smith of Trinity Pilates and Lily Collins of The Daily at King Plow for offering up their spaces. And of course I’m eternally grateful to all of those who have supported me along the way. You can check out my website and blog here and my facebook page here.
- I also picked up PRN PT hours at my first love: Children’s Healthcare of Atlanta. For those not aware, PRN basically means “per diem” or what I like to say “suuuper part time.” For those also not aware, my final clinical rotation in PT school and my first job out of PT school was with CHOA. I also took a huge brave leap and made a big career swap within the CHOA system—I’m no longer in the Sports Medicine Program (my true first love and a program that will always hold a special place in my heart), but now in acute care/inpatient PT at CHOA at Egleston Children’s Hospital. What I love is this is truly a full circle venture for me. I wanted to do some acute care work because of my own experience as the patient in the hospital, especially because sarcomas are much more common in kids. Egleston is home to the AFLAC Cancer & Blood Disorders Center and I’ve already had some awesome experiences working with kids with sarcoma. It’s an unlikely bond to have with a kid, but I love it because there’s a kinship there in knowing that I, too, have a childhood cancer. Egleston was also the place my parents took me when I was a kid being klutzy or falling ill. So it’s been a part of me for quite some time now. The team there is AMAZING and I’m loving every minute of it so far. I have a lot to learn since it’s an entirely new setting for me, and I’m excited and humbled to be mentored by some great therapists.
- I’m teaching Pilates private & group sessions on another suuuuuper part time basis at One on One Physical Therapy in Vinings/Smyrna with another rock star team. I was already affiliated with them with my previous job and I’m excited to stay connected. They are a wonderful bunch and it’s a beautiful facility. Come take some classes!
I know what you’re thinking…”WOW Julie, that’s a LOT of work!” But get this—I’m only working a total of 20-25 hours per week. I went into all of this with the mindset that my health and wellness comes first. With the help of some amazing coaches and mentors (shout out to those 2 fabulous ladies–Shawn Haywood and Jessica Drummond– Shawn here and Jessica here) I’ve been able to curate a lifestyle and mindset that embraces that and allows me to do what I love and focus on ME first. And the best part is—so far, I don’t feel like it’s work. It’s just a calling.
In other news, I just returned from a lovely and inspiring week in sunny Anaheim, California for the American Physical Therapy Association Combined Sections Meeting. I had the honor of presenting my work and expertise on the young female athlete alongside two amazing colleagues-Dr. Mandy Blackmon and Dr. Christy Zwolski. We had a packed room full of 350 eager and attentive PTs and I must say-we nailed it! What a great team! Teaching is so lovely and I was grateful to have had the experience to speak on the same topic last year so that this year I was aware of what to expect, what to improve upon, and how to better engage the audience. Next up: TED talks (Pipe dream!) 🙂 The trip was also punctuated by a twilight trip to Disneyland—in celebration of Disneyland’s 60th anniversary. It was easily the best Disney visit I’ve ever had. #takethatbenedict
Coming up: working on slowly growing my business, going to watch women’s NCAA swim championships here in Atlanta, and getting back in the pool myself. I had a lovely private swim lesson (yep, grown up “Swammers” like me sometimes need a swim lesson) with Megan Melgaard of Fix My Swim so I can venture into open water swimming and get involved with a lovely charity-Swim Across America. Swimming to fight cancer— Has my name all over it.
On that note, I’ll close this post recapping my visit to the Ocean of Hope film screening in Hermosa Beach, CA this past weekend. It was fortuitous that the event happened to coincide with my trip to Anaheim. Ocean of Hope (O2H) is a team of paddleboarders who compete and raise money for the Sarcoma Alliance. They did a film screening documenting 3 world renowned paddleboarders who paddled roughly 150 miles through the rough waters of the Bass Strait between Southern Australia and Tasmania. It was just them, their boards, and the ocean. Holy cow! So brave. Fittingly in their name, O2H is “dedicated to the sea of people affected by cancer” and the funds raised (over $800,000 since 1999) go directly to sarcoma patients, not research. They fund second opinions and/or trips for patients to see a sarcoma specialist. Fortunately I haven’t needed to utilize their funds since I have a kick ass specialist here in the ATL, but is that not an awesome cause? It was great to meet Aimee, the O2H team captain, and see the O2H team in action at the event. Can’t wait to get more involved with the team in the future.
That’s about it for me. Read on for updates from Benedict’s picture day in 2 weeks! He’s going down!